What Not To Say to a Parent of an Autistic Child

1. “He can’t be autistic because…” I heard a million reasons why Casey couldn’t be autistic when we were in the process of getting him diagnosed. They ranged from “He just looked me in the eyes!” to “He’s nothing like Rainman!” Parents have a hard enough time coming to terms with their child’s diagnosis all on their own. We spend months saying those very same things to ourselves. Then we get to a point where we know that what we are doing is right and seek out help. Having to constantly defend what we are seeing is taxing during a time where we don’t have much left to give. Autism comes in all shapes in sizes. It’s a spectrum of abilities and disabilities. It’s never the same in two children with the same diagnosis.

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Instead, say: “I’m new to autism; can you tell me more about it? What’s Casey’s autism like for him?” I love when people ask questions. It means that they are stepping outside of the stereotypes they know and are really wondering what autism means to us. It means they care and they want to learn more about my son. I don’t expect everyone to be an expert on every diagnosis out there. What I needed most was for people to just be there for me. After Casey was diagnosed, one of the greatest things said to me was, “He’s still the same kid he was the day before he was diagnosed.”

2. “He’ll probably grow out of it.” It’s been seven years since my son was diagnosed. He has not and will not grow out of it. He was born this way and his autism is a huge part of who he is and what makes him amazing. He has achieved so much through his hard work and through the talents of many amazing teachers and therapists, and he will continue to be autistic. Saying he’ll grow out of it discounts the hard work he has or will do. It also discounts the many good things his autism adds to who he is.

I want people to accept Casey for who he is, autism and all. I love it when people accept his quirks and even embrace them. My friend Erin has always done this. For a while after we first met, Casey would greet her by running headfirst into her. So she would turn around and do the same thing to him. It made him giggle uncontrollably.

I love it when people embrace him. I love being asked what Casey likes. I love it even more when people ask him what he likes. Anyone who is around Casey for longer than ten minutes ends up loving him for who he is, and that’s not in spite of or because of his autism. It’s because he’s a great kid.

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3. “I read that autism is caused by…” Please. Please don’t tell me that you’ve found yet another study that says it’s the mom’s fault. Please don’t post it to my Facebook wall that my being a little overweight or my living by a highway caused my son’s autism. I feel enough damn mommy guilt as it is. There is a new “study” published every week. I’m a fan of good research. The problem with these studies is that they are correlational. Correlation between two things does not mean that one caused the other, as is erroneously implied. More and more, the cause of autism looking to be all genetic. But, if you’re slightly masochistic or just enjoy a good argument, mention either side of the vaccine debate. See how that goes.

4. “I heard that you can cure autism by…” Oh, you are stepping into a minefield with that one. This has to do a lot with number three, above. We don’t know for sure the cause, and there is no cure. In fact, using the word “cure” in conjunction with autism pisses A LOT of adults with autism off. They like who they are, autism included, and do not want to be cured of something that makes them who they are.

Beyond that, there are too many shady doctors out there peddling snake oil treatments at an obscene cost. The “treatments” range from the benign waste of money to just downright dangerous. You can find everything from bleach enemas (I kid you not, ask Jenny McCarthy!), hyperbaric oxygen chambers, chelation, to funky saunas (You know, because people with autism love being enclosed in small, dark and hot rooms). Too many times people, whether they be celebrities who think they are doctors or doctors who care too much about being a celebrity, act as if you’re not doing everything they are doing, buying every one of their expensive and unproven treatments, you are not a “warrior mom” and you’re not trying hard enough for your child. I’m sorry, that’s bullshit.

Most parents go to great lengths to treat their child’s autism and to give them the best chance at being their best selves. My son has had speech, occupational and physical therapy since he was 18 months old. We tried alternative diets, but they didn’t work out for my son. These were never in an attempt to “cure” him, but to help him have the best chance at success, however that comes to him.

I’m always grateful that people are paying attention to autism related stories. It’s really nice that people care enough to want to have a dialogue about autism. I’d much rather have you say though, “Do you have any favorite books about autism? Where do you go for your information?” This is so much better than inadvertently making us feel like we caused our child’s autism and now aren’t doing enough to cure it. (On a personal note, if you say to me that “Jenny McCarthy cured her son, why haven’t you?” You’re likely to get punched in the throat. )

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5. “You’re my hero!” “God knew you could handle this!” “Special kids for special parents” and other such platitudes. I swear there will come a day that I roll my eyes too hard at one of these that they’ll get stuck inside my head. I get that you’re trying to be nice. I get that you think you couldn’t do what I do. I know you want to think that there’s something amazing about me that gives me the ability to handle having a child (or two) with disabilities. But there is nothing fundamentally different about me than any other mother. I am a normal mother in an abnormal situation. I do what I do because I have to, and you would too if you were put into the same situation.

I cannot emphasize this enough: special needs kids aren’t sent to special parents. Some parents are amazing without even having a kid with special needs! Some parents just plain suck, and some of those do in fact have kids with disabilities. I am not some sort of hero. I have not been endowed on high with some sort of powers that make me any better at parenting two children with special needs than you would be if you were in the same circumstance. Like with anything with parenting, you learn as you go. You make mistakes. You cry, scream, swear and start over the next day. Saying that I’m some sort of hero puts me on an impossible pedestal that I don’t even care to be on. I am a normal mom in an abnormal situation. What I need you to say is, “How can I help?” This is the not-so-secret secret very few parents of children with disabilities will tell you: we aren’t perfect. This is hard. We need help. We need a break. We need sleep.

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If nothing else, a very simple, “You’re doing a great job!” goes a long, long way.

6. “____________ ” Way worse than saying any of the items from the list above is saying nothing at all. Autism can be a very isolating disability, for both the person with autism and the family members. It makes getting out and doing family activities or sports very hard. Socially speaking, we are taught and subsequently teach our kids to not stare at and to ignore someone who may be behaving in a way that seems weird. Not surprisingly, teaching someone to ignore a person that behaves differently a lot, ends up leaving that person ignored completely.

In writing this list, my greatest fear is that in telling you what not to say, it would make you afraid to say anything at all. That is the last thing I want from this. Most parents of children with disabilities are perfectly comfortable talking about our kids. We are every bit as proud of them and their accomplishments as you are of your children. Talk to us. Ask us questions. There is nothing you can say if you are well-meaning that could ever be worse than saying nothing at all.

About the writer

Lexi Sweatpants is a writer, wife and mother of four. Her middle son has autism, her daughter has Down syndrome. She has sleep deprivation and a deep passion for candy.  She writes about all of this and more at Lexistential.

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DocD 1 week ago

In spite of a huge amount of money spent on research, the etiology of autism remains uncertain.
The rapid increase in incidence almost has to be related to the sea change in parenting style since prior generations, as a genetic cause in this short of time span is ridiculous, and no evil deep pockets corporate villain has been found.
During our grandparents time, many believed that kids should be seen and not heard, and the adults were put first, and were in charge.
Today, that has been reversed, and I have seen kids who boss their parents around. In addition, many parents walk on eggshells trying to create a perfect environment for their kids, shielding them completely from any pain or discomfort.
Perhaps this lack of stress robs them from any opportunity to develop normally, for a neurological standpoint.
In prior generations kids were hit or yelled at if they acted up, today that would be labeled child abuse. Some cases of so called high functioning autism might be explained by kids who have never experienced any stress or discipline, in other words “spoiled”. The relationship people have with their children is unrecognizable compared to just a few short generations ago, and kids and even infants can sense the power they have, as well as the fear their parents have of offending them in the slightest way. This situation is new in the history of mankind, and we are only beginning to see the effects as these kids reach their late teens and early 20s.
It is interesting the author feels empowered to tell others what to say to her about her child’s disease, a sort of entitlement in and of itself. A child raised with this social milieu, one of totally empowered “victim” might be more likely to be labeled as part of the ASD rage, as a secondary gain of special treatment and coddling from society at large might be expected.
I would suggest reading Frank McCourts “Angela’s Ashes”, about growing up during the great depression in Ireland. If you want to see an environment that did not create autism, as starvation was a more salient concern.

Anonymous 2 weeks ago

Great job!

Terrence Percy 2 weeks ago

Family – – your beloved siblings can be the most cruel. They often don’t offer support, only judgement. I have been greatly disappointed by my family, and have found nurturing refuge in the loving acceptance of other families that live with autism and “get it”.
Still makes me sad to realize that ‘family’ won’t ever really get it.

Norah 3 months ago

Very enlightening, thank you for a wonderful read.

Candy 3 months ago

I’m a mom of three children and my youngest has autistic traits and ADHD with a severe learning disability. My husband and I try our best to provide each of them with equal but different opportunities. We’re extremely busy driving our children to their activities and helping them with their music studies and homework. There are many appointments with specialists, the school, speech therapist or occupational therapist for our son with the disability. We are a regular family but with more challenges to deal with and perhaps a busier schedule.
My 9 year old son struggles academically and is delayed with his development. He has made great progress socially because of his fabulous teachers and educational assistants who have been extremely supportive and inclusive. He has great school friends who would always include him, invite him to their birthday parties and even request a play date. Kudos to these teachers and to the parents who are raising such good children to be accepting and kind. It has not been easy for our family to have a child with a disability but we have accepted it and such good people are helping our son and our family get through it. Thank you so much.

Sandee Holtsclaw 3 months ago

Excellent article! Wish you were around back in 1984 when testing
was done on are 4 yr, old daughter. Asbergers was unheard of, autism was never mentioned. We were told she was behond shy and withdrawn. Something was wrong. We were encouraged to take parenting classes and stop sheltering her, and let her bond with family. She was also put in therapy where the psychologist would have her drawing pictures. For the next few years also put in speech therapy classes. Come 6th grade her teacher suggested she be tested for autism. Unbelievable, she was so smart, always read books, encyclopedia ‘s into the night! We filled out multi paged guestionnaires all on her habits etc. Then she saw a remown child Psychiatrist specializing in spectrum disorders of Autism. It was with great relief it was nothing we did , and now we could move forward ! Thank God! So, I ‘m very happy there is so much help and understanding today for all these precious children! God bless this site that reaches out to so many people! Thankyou!

Kat 5 months ago

Thank you so much for this. It is wonderful to find a kindred spirit in the Autism Mommy Experience (sounds like a band!:) I really enjoy your blog and I am so grateful to find I am not alone. Thank you.

Thomas 5 months ago

I know mom’s do most of the work or all the work. But please don’t forget and the father’s who walk right along side the mom’s in these amazing times. I am a father of 3 special needs children and everyday is a new adventure for us.

And yes thank to to all the mom’s who do so much for there children. And for writing this article.

Reta Brosnahan Saffo 5 months ago

My son, whom is mildly autistic, is now 24. And, although some may not want to hear “it’s just a boy thing”or “he’ll probably grow out of it” the fact is (in our case, at least) that he did. He did indeed grow out of much of his autistic behaviors– and a good deal of it was indeed just him “being a boy”. He quit the stimming around age 11-12 (twirling/spinning). He learned to self regulate and self modulate more and more as the years went on.

His frustration levels diminished more and more as I would immediately remove him from any and all frustrating situations (such as uneducated teachers, bullies in the classroom, impatient relatives, ignorant sales clerks, etc). It wasn’t easy for me, I will say– and I worked my butt off. I had no problem losing friends, neighbors or even relatives over this kid of mine… and I blasted any ignorant person every chance I could (they will never be the same for having encountered me– that’s for sure)! In fact, I became quite disliked in our small community of Mission Hills, Ks. But– this is my son, my disabled child, we are talking about here. A person. A person that has to make it on his own one day– alone. I did what I had to do regardless of who liked it– or not! I am lucky in that it never meant that much to me to mean that much to anyone else (except my child). Some parents are not so fortunate. Are self conscious. Popularity means a great deal to some/most. My son saw my fight for him– my plea for better education of teacher’s and staff member’s.. and more basic human decency… and compassion (it made him proud inside)… and he slowly became a much calmer kid than most his age. I think it soothed his anxiety to know I was behind him 100% … no matter what.

He saw, on his own, that his little peculiarities and social awkwardness were preventing him from making or maintaining friendships– and were also making life a lot easier for all the bullies out there (including teacher’s and principal’s). There were hours and hours of tutoring each and every day after school. It took time– and lot’s of it, no doubt… but he did grow out of much of his autistic behaviors. The psychologists and psychiatrists said he could very possibly grow out of much of them (along with a little help from medication)– and they were correct! He pretty much did! It was a long, tough journey with him, and a great deal of effort (mostly on my part) that produced an absolutely beautiful young man!!! Yes, he still is a bit “different”… and he knows it. In fact, he takes great pride in being unique (I love it)! But, as he says: “I’d rather be me– any day of the week, than anyone else I’ve ever known”. And he means it. In seeing the way most young men are today— I feel the same as he does. I wouldn’t want him ANY OTHER WAY than autistic! And I mean that.

I’m not saying it was easy (God know’s it nearly killed me). But– it’s almost as if it was all a blessing in deep disguise (at least in our situation). He attended two years of college in Putney, Vt (for LD students), studied abroad in Chile for a semester, worked in Yellowstone Nat’l Park for a summer– and just now got his own apartment about 20 miles from our home (in New Mexico). He is so well loved and admired by both his peers and employers alike. Wow!! We did it. Together. My tongue sticks out to all those who thought (and secretly hoped that perhaps our work would all be in vein). It was not. No, it was not. Wooo-hooo! :)))

Hannah 6 months ago

Finally! I love this article, it just says it exactly as it is! Thank you thank you thank you!!!

Sue W. 8 months ago

I tried to copy and paste this so I can share the list with people at my church. It all turns out black. Help…

Tamika 9 months ago

Thank you for this Article. I have a son who was recently diagnosed as having more than just a delay but possibly Autism. I haven’t spoken to anyone about this because I am a private person and I’m still going through the emotional part of this whole process. I’m not ashamed of him because his diagnosis doesn’t change that he is my baby and always will be, I was just having trouble gathering myself to prepare him for the future. All of what you wrote is what I feel. I was unsure of how to articulate it. Each day the more I read the better I feel, but each day it still feels like I’m standing in the middle of an ocean of information and misconceptions that I don’t yet know how to filter. This was a good Article for me, made me feel better. I was feeling down before I saw it. Thank you!

olga 12 months ago

I agree. My child has autism. and I have been living in a fish tank. When you have an autistic child, it is like you sign a waiver to a right of privacy.

Angela 1 year ago

Amy,
Totally agree with you on the non-physical disability becoming a heated topic. The mainstream schools our son attended previously to being enrolled in a school for kids with autism was, “He looks normal, so he’s fine.” Yes…he “looks” like an extremely handsome, little boy…but wait until you see him in action. The school staff turned on a dime after the first couple of months. “He’s not being mean…but he’s not acting as he should” would be the continuous stream of comments from the school. Thankfully, our son’s attending a school for children with Autism and he couldn’t be happier! Nor could we, as his parents!

Angela 1 year ago

Alan,
That’s not an issue with Autism. That’s an issue with parents that don’t know how to watch their kids and direct them properly. Our son is on-spectrum and we don’t let him go wandering around the neighborhood, or next door for that matter. To me, it sounds as though the neighbors are neglecting to wrangle their child. I’d ignore his knocks and keep the blinds pulled shut. That’s what I’d do…sounds like you’ve already talked with the parents and they don’t listen.
The other suggestion I can think of would be to write out a note and leave it on their door…keep it light and friendly, but mention that you need personal space.

Angela 1 year ago

Hi Keli,
I think so many parents (including me,) try to help others understand why a child isn’t acting as they should. Whether it’s because my son’s yelling uncontrollably or fixating on something relentlessly, we want others to feel more comfortable. When you don’t explain what you’re doing or why your son is behaving “oddly” as some people think, you get many strange looks. I don’t go out of my way to point out he’s a child with autism, but I do mention it if people start giving me funny looks.

Angela 1 year ago

Oh yes…we also receive the suggestion to spank some sense into our son when he exhibits what others consider aberrant behavior for a child. It’s disconcerting that is the first tool of reinforcement folks leap to when a child isn’t behaving per their expectation.

Angela 1 year ago

Thank you for posting these points! Our son was diagnosed with autism at age three. He’s always had movement tics, off-and-on verbal tics, and is very high functioning. It is extremely disheartening when people try to tell you “at least he’s not as bad as….” Looking from the outside in is much easier than helping your child cope with certain behaviors.

We constantly hear the refrain from certain family members that “he’ll grow out of it…” or “that’s just a boy being a boy.” We only recently have felt some support from family after a family member watched him over the weekend with his sister. Again, thank you for posting!

bev 1 year ago

I understand the point in the original post. I think what people who aren’t familiar with autism say is often unintentionally hurtful. In the same way that people say hurtful things in other sensitive situations. How many times have we *all* tried to say something in a touchy situation and it comes off wrong, or we fear it will anyhow. Which isn’t to excuse what they say, and it isn’t to say we shouldn’t educate them. I think the thing that almost *never* gets brought up is what we say to one another within the autism community that is hurtful. We are as divided as any community as any and far too many of us say hurtful things to one another based on the assumption that either we or our children are all affected by autism in the same ways. Nothing could be further from the truth. My son is non-verbal, epileptic and has other neurological issues. But they’re all part of his autism. Which isn’t some one else’s autism. But it’s still just as much autism. I’ve been scolded by an autism parent for spoiling my child because he couldn’t tolerate an alternative therapy. I’ve been told that I need to try this or that by the same folks. It isn’t any more acceptable coming from within, in fact, I find it more hurtful. I don’t care if the advice is grounded in personal experience. If it’s unsolicited, it’s unwelcome.

JoAnn 1 year ago

I have heard all of these more than once, and other remarks that were just as ignorant and/or insensitive.
“I don’t know how you do it! Being a mom to a regular kid is hard enough”. Gee, thank you. Or “Don’t forget to take time for yourself.” Like I would forget if I even had the luxury of doing so. And take it from where?
Honestly, I’d rather people say nothing than make a stupid comment, but I can understand wanting people to acknowledge your child as they would any “typical” child. I have three kids with Autism and I get all kinds of questions and comments. I don’t mind if people are genuinely interested or concerned, but it continues to prove that people that have no experience with this and will never understand what it’s like.

Sheogorath 1 year ago

So just say, “Oh, you don’t want Neurotypicality with its concomitant lack of empathy.” I’ve found that shuts most idiots up first time!

Sheogorath 1 year ago

“I heard that you can cure autism by…”
Whenever someone says the above to me, I answer them with, “The only cure for Autism that is proven to work is to kill the Autistic person, that’s why people who think Autism should be cured are indirectly supporting murder. It’s far better to use effective therapies for the negative traits that some Autistic people have.” Simples!

Dorsy 1 year ago

This post concentraits so much only on negativity, very negative aproach! I have a son with autism myself, I love him dearly! How about something more positive? “What to say to a parent with child that has autism”.

Elaine 1 year ago

I cried when I read this article. I am raising my grandson who has autism and I am doing it alone. It is so hard and I feel so isolated the majority of the time. He is so wonderful and I love him so deeply, I have no regrets over this choice. But it is hard to deal with other people. The biggest thing is that I have people who say they will help me with him and then they never show up to help. Even if I pay them. That is painful to deal with. PLEASE do not tell a parent/guardian that you will help with their child unless you actually have some time to do it. We all have busy lives, if you are too busy then just don’t offer!

Hannah 1 year ago

I will be teaching a class on how to talk with the parents that have children with developmental disabilities, they need to know about the child without sounding to up front, ( things that work, things that don’t work, how to help them in an inappropriate behavior,) things like that. They just need to know how to ask those type of questions, and what to do when a parent is not upfront about things their child may do. Any feed back would be great. I love this article by the way, I believe we have come along way with autism awareness, back in the day you couldn’t take a child out that had this disability with out people being rude, the more we are out in the community the better. So what if this person has autism, they want to go to the mall and buy a shirt without people staring, laughing, or judging. If they look deep enough they are the ones with the problem, not the person who has autism. Anyway I could go on and on about my views, like I said, any feed back would be helpful on how to ask question to the parents.

thanks .

gry rpg na pc 1 year ago

Good post. I’m experiencing some of these issues as well..

Andy 1 year ago

Also I think the words “well-meaning” are strung together so often to justify basically this thought: “I wanted to say something so I said it, I didn’t mean to specifically offend you.” But so often the words have no actual intent, they’re just thoughtless comments, which in and of themselves are not well meaning but entirely devoid of meaning, meaningless. To often people think that spouting uninformed talking points is somehow necessary or helpful, when in reality they are satisfying their own ego’s desire to have something, anything to say about a topic. There’s a ton of terrible “well-meaning” advice out there and usually the advice-giver’s intentions are to feel good about giving advice that is rarely grounded in personal experience, not to actually have good educated advice in the first place.

Andy 1 year ago

The “big girl panties” comment is far more condescending than anything possibly mentioned here, and is decidedly unhelpful. If anything, I think a certain type of people are more offended by learning about the things that offend other people than anything else, and they flip out and beat a drum any time someone asks them to reconsider something they might think or say. As if they never dealt with learning any basic etiquette or consideration, and their Pearls of “Take it Or Leave It” Wisdom never deserve to be challenged. It’s so HAAAARD to be thoughtful and considerate. So toughen up and do it anyway, it’s a big world out there and you’ll learn a lot by not aggravating everyone with tone-deaf thoughtless comments that seek to demean other people for whatever reasons.

There is no “magical” expectation here, it’s a list of cliches that come up and don’t tend to be helpful, and if your immediate impression upon finding such a list is to simply stop reading before the end and never talk about autism again, please do that, because that personality trait isn’t going to ingratiate you with anyone and your words then are only self-serving. There’s nothing wrong with outlining offensive cliches here and if someone is too offended by their existence to read them and perhaps consider what they say before speaking (basic social interaction stuff that we often forget with topics like this) then that’s one less inconsiderate person flapping their uninformed gums.

Autism in children 1 year ago

Thankyou for the wonderful post !!!!!!!!!!!!!!

Joy 1 year ago

I agree with all of this. When we found out our son has autism, we also found out that I have it too.

We went for years with people saying there was something “wrong” with our son, and when we’d ask what the problem was, they would say things like he can’t sit still, doesn’t look people in the eye, wrings his hands, etc. etc., and I kept asking why they had a problem with those things, as I do all these things – always have – as do several others in my family.
Autism isn’t necessarily caused by anything except genetics.
But another thing that upsets me that some people say is that he/we can’t have autism. They say, oh you don’t want autism. I wouldn’t wish that on anyone. That’s the worst thing that can happen to a person. I want to wring their necks for saying this (literally). As if mild autism is some horrible affliction. Maybe I don’t see it the same, but I really think that often it’s the NTs who have the problems. Just let us be us and stop trying to change who we are.

Brian wick 1 year ago

Good story! … Aspergers is somewhat the same condition. I hate it when I overhear or know that someone said “Hmmp! All she needs is a good spanking and some parental discipline!”

Domsmom11 1 year ago

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\outl0\strokewidth0 \strokec2 @the comment that you will be “surprised by what he/she can achieve.” I like to help others see it from different points of view. For instance wouldn’t you be surprised by the achievements of any child? or your own? with or with out autism? unless you can see the future, you can not predict the achievements and know for certain where any child will end up. it’s part of parenting and you will always feel like you could of done more or the what if? no matter which path you choose.

Gigi 1 year ago

I’d like to add that as a parent of an autistic child, one of the worst things to say is “You’ll be surprised at what your child will achieve.” There is really no positive to this one. I know it’s well meant, but it makes it sound like the parent doesn’t think the child will amount to anything, and that only the speaker has high hopes for the child. The most charitable thing I could describe it as would be a backhanded compliment, but it comes across as a plain insult, even if that’s certainly not really the speaker’s intent.

Another couple of ones, which are basically like your numbers 1, 2, and 3 are: “He/She is not autistic. He/She is like that because you are a stay at home mom and didn’t expose him/her to other kids much.” (This gets said even IF your child has playdates, social opportunities, library time etc – you can’t ‘win’ on this one). Likewise, I strongly suspect that if I’d been a working mom instead, the same people would have said “he/she is like that because you didn’t spend as much time with your child as a stay-at-home mom”!

Also, being an older mom, I’ve had people imply quite strongly that they thought this was the cause of my child’s autism.

Anyway, sorry for this venting. It was good that you wrote this article and hopefully people might become more aware to just think a little bit before they speak. Most people’s intentions are good, and I try to take things in the spirit they’re meant.

Please please, do you have any advice for me for how to deal with the comment of “he/she will surprise you with his/her achievements”? This seems to be a recurring one, and so far I don’t have a good response other than “Yes my child is very intelligent.” Would love to get some help on this.

Domsmom11 1 year ago

Thank you Lexi for this post, I have worked with children with autism for over 12 years and now we our one week later after our own sons diagnosis and I hear all of these things 10x a day and each time it makes me feel like crap!! I haven’t wanted to be around any of my family and their “typical” kids (whatever typical is these days) and having the work experience for so long add to the list “well if anyone knows what to do with a child with autism, you do” what does that even mean?? people do try and how can you fault them, right? as if we don’t have enough to feel guilty about as moms.

Autism in children 1 year ago

Superb post with various experience that parents has to face this has helped me a lot

Charlotte 1 year ago

I know that most people mean well but sometimes I want to punch ppl in the face. My neighbor saw the bite marks on my son’s hands and suddenly became the expert, telling me I need to give him massage and she showed me how to do it supposedly. My son ran away from her as he would with anyone giving him a massage or trying to touch him period. I told her that this would not stop him from biting his hands and she did not believe me. She said “I imagine it would stop him” and I said “No!” Then I remember thinking…all she has to do is imagine and suddenly her guess is better than a doctor’s? I don’t care how many kids you have (which baffling enough like me she only has two and they respectively are younger than mine)…if you do not have a child with autism…amd autism as severe as his…then do this for me…shut up!

Natasha Alex 1 year ago

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Miss JJ 1 year ago

Thank you for this article. My friend is having her son tested soon. You have helped me know how to form a response if he is indeed autistic or some form thereof

Miss JJ 1 year ago

.Thank you for number 5. I am the mother of the 15 year old girl born with arthrogryposis. I’ve heard these kinds of things her entire life and it makes me ashamed because I’m no better than any other parent out there with a regular kid. In fact as a parent of a child witih special needs I should be much better bu I suck a lot of times. Even parents of kids with the same condition say things like it’s a gift, it’s a blessing, I wouldn’t have them any other way. Bull crap, yes you would. No one would choose for their child to be born with a disability. If you’re saying I’m a hero because I didn’t abort my child or give her up for adoption, then fine, but accepting them as they are shouldn’t be hero qualifications.

UsedtobeEP 1 year ago

I never, ever respond to things on threads like these, but I have a brother on the spectrum and I can imagine this scenario easily. Those parents do need to reign in their kid, but without their vigilance, what you might try is setting some gentle boundaries that he can understand. Set a timer for him when he drops in. When the timer goes off, it’s time for him to go home. You can blame the timer; you are less of a bad guy. On weekends, instead of dreading the inevitable visit, make an appointment with him. Send a note home saying, “We can visit with X on Saturday from 3:00 to 3:30, if he’s available.” Then, plan something all of you will like. This puts you in charge, plus, you will have a nice way to get through the time together, and you will still be sending a message that says all day, every day is not OK—but a little time is. You’ll still be seen as the nice neighbors, hopefully, and get a little peace too. And he will hopefully learn to give you a little space. That lesson is so hard to learn but it’s important for him to learn it, for his own sake as well as yours.

tory06 1 year ago

Being pressured into choosing what program to sign my child up for after high school, I was told “You know you better start signing up on the waiting lists, you know some day you’re going to die, then what will happen to him? Have you thought about that?” This was asked by the teacher, I was in shock! Have I thought about that? Just every morning I wake up and every night before I go to bed since he was diagnosed.

Tina 2 years ago

One of the main things I struggle with as an adult is people’s assumption that I would “open up” or be social if all they had to do was be friendly with me. This often ends badly because that’s not the case. I just want to be left alone. My ignoring you does not mean I’m a bitch or a snob. People get offended when their attempts to be friendly don’t end with me wanting to communicate with them. This is how the bullying and gossiping starts and I’m called crazy and weird. I don’t want to socialize with anyone, not just you, so don’t take it personal, I am happiest when I’m alone and people act like I don’t exist. That said, not everyone with Asperger’s feel this way, please keep that in mind.

Tina 2 years ago

Brenda, as a 36 year old woman with autism symptoms I can’t hide (like lack of eye contact and extreme awkwardness), I can tell which strangers understand me and which ones don’t. There is a certain peace to their stair and approach, like I can almost hear them saying “I understand”. So don’t think that your positive attitude goes unnoticed or unappreciated. The informed make my life SO much easier. I don’t have to worry about men or women thinking I am flirting or lying to them just because I can’t look them in the eyes, they know why I can’t do it because they cared enough to do the research.

Education for Autistic Children 2 years ago

I loved this blog too good….

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Alan 2 years ago

I hope no one takes this the wrong way because I’m just looking for some advice. My family moved into a new neighborhood about four months ago and our next door neighbors have an autistic boy the same age as our son. They were overly friendly from the get go and told us multiple times how happy they were that we moved in. We are compassionate people and have tried to be understanding regarding their son. The problem is he constantly comes over- his parents get home before us so he is waiting in our driveway when we get home from work/school and will not leave. I have a stressful commute and need my “transition time” when I get home. He knocks on our door and if we don’t answer he peers in the window and goes around to the back window. When he is in the house he yells his words and does not respect the rules of our house. He gets in to the pantry and fridge without asking and goes through cabinets. Half the time our son doesn’t even want to play with him. On weekends I dread hearing the knock on the door every Saturday and Sunday morning. If we go outside he comes running over within five minutes. Sometimes we just like to sit on the porch without being bothered. We have told the parents a few times (in a nice way) that we cant have him constantly coming over the second he sees us pull into the driveway or step outside, but it is ignored. We feel that they are taking advantage of and I’m really getting angry. I’m almost to the point of telling them that their child can’t come over anymore. I have heard these parents viciously bash people for not being understanding, so I’m sure we will subjected to the same if I do tell them that. Any advice on how to handle this situation?

Janet 2 years ago

What a fantastic article! I have bookmarked this and will share it with my friends.

I would also like to say that this article has good advice for people facing other struggles too, particularly points 5 and 6. Although I don’t have a child with autism, I have other challenges in life. During point 5 I kept saying “YES” aloud as I was reading. I am no stronger and no more special than anyone else, no matter how much better it makes the friend/relative feel to say it. As for point 6, I can wholehearted endorse the writer’s feelings that it is far
worse to say nothing at all. I have had many people say silly things but
it is the people who pretend that nothing has happened that are the
most hurtful.

Thank you to the writer for this article. It has encouraged me and further educated me about autism.

Janet 2 years ago

I don’t have a child with autism but I have other challenges in life, and I can wholehearted endorse the writer’s feelings that it is far worse to say nothing at all. I have had many people say silly things but it is the people who pretend that nothing has happened that are the most hurtful.

I also find the notion ludicrous that one person’s struggle shouldn’t be acknowledged because it must seem like “a walk in the park” to other people’s struggles. There is always someone worse off, no-one is denying that, and by that same argument no-one’s struggle should be acknowledged.

I personally believe you should take a look in the mirror before “ranting” about other people being narcissistic.

Bek 2 years ago

I work with adults who have significant and multiple disabilities. My children, naturally, are very comfortable with any people who have a disability. I asked them. They said they always start with eye contact and a smile, then take it from there!

Mark Mitchell 2 years ago

“You’re my hero” bad. “You’re doing a great job” good. Ok, got it.

Lorena Breneman 2 years ago

Great, great tips. Thank you. And clearly, you ARE doing a good job. Can I ask a question? On the ignoring thing …. yeah, that’s how I was taught – don’t stare at the girl in the wheelchair, don’t stare at the boy with the leg braces, don’t stare at the girl lurching down the hallway. I can see how not staring can equal not-getting-to-know them. What can I teach my children about the best way to get to know people with handicaps (and I’m so sorry, maybe a post on autism is not the place to ask this question, but I’m hoping for some answers) without making them feel wrong for being different. Some differences really are scary to some children. How can I teach them to handle that well? (and as their mommy, how can I model handling that well?) Thank you so much!

Amelia Elias 2 years ago

Here’s a quote: “My son has had speech, occupational and physical therapy since he was 18 months old. We tried alternative diets, but they didn’t work out for my son. These were never in an attempt to “cure” him, but to help him have the best chance at success, however that comes to him.”
How you can take that to mean that she’s not trying anything to help her child and has given up on him, well, I just don’t understand.

Amelia Elias 2 years ago

I believe the article isn’t aimed at people who don’t ask about kids in general, but instead at those who are having a nice conversation with you about your kids and then clam up and walk away when you mention your child has Autism. And yes, that does happen–I’ve had that happen to me. As a parent, it makes you angry–what, are you afraid you’re going to catch it if you talk to me for 3 seconds longer? But nothing here requires you to start a conversation where none was before.

Amelia Elias 2 years ago

Really? Because having a conversation with any parent about any child, and learning something that’s off from the usual (Autism, or diabetes, or that the child died, to use your example) and then going stone-cold silent–you don’t think that’s offensive? It’s not a scale of “my problems are worse than yours,” it’s just common courtesy not to turn away and freeze someone out because their child-rearing experience isn’t out of a perfect magazine. Anything she said in this article could apply to the parent of a child with all sorts of issues. I’m pretty sure she made it Autism-specific because that’s what her child actually has.

Amelia Elias 2 years ago

As far as I know, there’s not an HIV vaccine.

Amelia Elias 2 years ago

… I really think you missed the point of this article. What she’s saying is that these types of comments are not helpful to a parent. I didn’t read anywhere that she said she’s given up and doesn’t try to help her children reach their full potential. There’s a lot of assumption in this comment, wow.

Amelia Elias 2 years ago

I don’t read it that way at all. It sounded to me like she was getting people saying things that are DESIGNED to make a parent feel guilty (I hear them all the time myself) and wow, people really need to just stop saying stupid things.

Amelia Elias 2 years ago

Hugs to you! Remember at all times that nothing, NOTHING you did caused this. NOTHING. You are no more guilty of giving your child Autism than you are of making them not tall enough or wear size 5 shoes or whatever. You had NO control over it. You just concentrate on being the best parent you can be, right now in this minute, because that, you DO control! And anyone who tries to guilt-trip you can just stfu. You’ll get through this rough time, I promise!

Amelia Elias 2 years ago

Thank you for wanting to know more and to help! I have to say that the best response I’ve gotten from people when they learn I have a son with Autism is, “I don’t know much about that. How does that affect him?” Then I get to tell them more about his specific Autism. Never be afraid to admit you don’t know, never be afraid to ask for more info! :)

Amelia Elias 2 years ago

“No, but right now I’m considering putting you in the hospital” is the only possible reply to that!

Amelia Elias 2 years ago

THANK YOU THANK YOU THANK YOU for adding the many ways in which people phrase, “God chose you for this special child” because THAT MAKES ME INSANE. First of all, I don’t believe that God sits around up there with a bunch of really challenging kids and then singles out people and says, ‘Yeah, let’s make HER life more difficult, that’ll be great!’ because while I love my son more than anything in this world, he has certainly challenged, frustrated, and occasionally just befuddled me beyond words. I wouldn’t change him, but sometimes I have definitely needed a weekend off.

And there shouldn’t be anything wrong with admitting to frustration, anger, or anything else you feel, yet to even dare to hint that parenting an Autistic child is difficult and that I might could benefit from some help is absolutely impossible after that statement. After all, God Himself decided I can handle it all by myself, right? Who am *I* to contradict GOD??? Having my son makes me an automatic superhero, and as we all know, Superman does NOT have a sidekick.

Also, what’s wrong with parents of neurotypical kids? They didn’t make the cut? When you’re really, really, super-awesome you get a special-needs kid, and theirs are so depressingly NORMAL (another word with boatloads of baggage), so everyone else here on the playground sucks. Is that what you mean to say?

…yeah, it just doesn’t work for me at all.

Kriskras 2 years ago

I also get p***ed off when people say that my son can’t have Asperger’s as he isn’t this way or that way or like someone else with it! Stupid, ignorant people, no two are alike, just like no two people are alike. My stupid parents, father in particular, refuses to accept my son has Asperger’s and most of the rest of both sides of the family are not much use, except for occasional wanky stories of the extreme success stories, which p****es me off also. People are so annoying and they just don’t get it – don’t even try to even when you have the patience to explain it – the only ones who do are people dealing with other disabilities or the same one. It really is isolating and the other kids’ parents act as though my son is a leper or something and their kids will be worse off playing with him when he is actually kind, gentle, good at sharing, etc. :*(

Rongen Robles 2 years ago

Is autism a disease? If not, why many people are finding cure.

Brenda-Chris Delaney 2 years ago

Thank you for this, I am going through my son having testing for Autism, and I am so damn scared and feel soo very guilty, I am having trouble coping is all

Amanda 2 years ago

Ha! Perfect list!!

http://www.theimnetwork.com 2 years ago

Your way of telling all in this piece of writing is truly fastidious, every one can simply understand it, Thanks a lot.

Sue Bachman Fisher 2 years ago

amen

Anonymous 2 years ago

P.S. Sounds, from reading your article, that's there's also a lot of dissociated guilt there. I read many things about not wanting people to be thinking that you caused it, that you haven't done everything possible and so on. Why worry about that shit? Of course this is not your fault and you would obviously do whatever you knew of to help the situation. We all do. But, I'm just requesting that you don't start narrowing your viewpoint to fit what's happened, but to simply use history as a springboard for greater results.

Anonymous 2 years ago

Hey, I do think you've touched on some good points, but there are some things I'd have issue with. First of all, how can you say definitively that there's no cure for autism. The fact is, for both you and me, that WE DON"T KNOW. There have, at any time in history, been lots of things that were thought to have no cure. But, later, we human beings found exactly what was said to not exist. Remember that one thing that no one can make a judgement on is "Unknowns."

Secondly, There's no telling whether all of the evidence saying that autism is probably caused by one thing or another; vaccines and so on, is absolutely correct. However, don't rely on the "Genetic" card just as a cop out. Truth be told about that: you don't know that either. So, why limit possibilities?

Don't make yourself feel comfortable by not exploring every avenue. I have a very low functioning autistic stepson. And, while I don't project any of my expectations on his development, i also don't limit what's possible to him due to my fears. Truth be told, it's just easier to say that things won't change and it's just in the genetic code.

I've seen, on film and from studying the lives of many others with autism, people who appeared to be way worse off than him that staredt talking at 14 and, from then on, learn at a highly accelerated rate. Some have ended up becoming bestselling authors and speaker through communicative devices. So don't sell anyone short because it eases you to say "Well, there's nothing I can do. I don't have any way to help this or figure out how to repair it."

Kathryn 2 years ago

You made me smile.

My 11 yr old has Asperger’s, and it’s been a bit of a roller coaster getting him diagnosed. I think the worst is when my in-laws told me there’s no way that my son could be autistic because he’s so loving. I know they were being kind but I wanted to punch them at that moment. He interacts with the world differently, but his unique view doesn’t stop him from loving…it can hinder how he expresses it, but that’s par for the course. So yeah, I sometimes feel like I need a sign for friends and family that has those rules on it.

Is it me, or is it worse when it comes from family. Strangers’ comments don’t affect me as much.

Ray King 2 years ago

why not show a face

Carolyn Webber 2 years ago

This is an amazing article..I think everyone could learn something from this.

Annie Berryhill 2 years ago

Great article…and though I do not have a child with Autism, I do have a son with Type 1 diabetes and the What Not to Say's are dead on for that situation too! I get frustrated with well-meaning people tell me about "cures" for diabetes. There are 2 kinds, and Type 2 is curable (its often a result of bad lifestyle choices..ugh)….If green moss from the north facing side of a ungabunga tree cures diabetes so well, why isn't the massive population of T1 Diabetics USING IT?
I know you know what I am talking about!
Thanks for writing, sharing and being so transparent and honest about your life and struggles!

Sheila L. Vaught 2 years ago

First, THANK YOU for what you are doing here! It makes my heart want to explode with joy when I see someone wanting to educate others on Autism. I, personally, do not have any children with special needs, but a (very) close friend of mine gave birth to a son who was later diagnosed with autism. We are 30-31 now, but we were 17-18 years old raising babies on our own, her a son and me a daughter. We practically lived at each others homes helping the other with their baby! We first noticed something was different with her son when my daughter started talking and doing stuff he should have been doing, but hadn't and he was almost 5 months older. At first she thought he was just slow picking up on things, but by the age of 2 she knew there was more to it. She took him different doctors and had multiple test done trying to get an answer. Finally, one of the doctors came back with autism. For the longest she blamed herself and the father, but with the support and help of her family and friends she pulled through and faced it head on. I remember the two of us walking through Wal-Mart with our children and her son started having a melt down and a woman made a comment along the line of, "If you wouldn't have had a kid while still being a kid…." and she jerked her head around and belted out, "Excuse me? I'm 26 years old, first off! Second, my son has autism you B****! Now, mind your own d*** business!" Of course, she was only 20-21 a the time, but that lady didn't know that. LOL Her son is 13 now and is one of the smartest, most amazing, and loving young men I know! Thank you, again, for sharing your story and advice on what people should and shouldn't say.

Brian 2 years ago

I have to disagree with this. Its extremely hurtful to ANYONE to not discuss their child. We had a woman at the office that had a child born with horrible genetic deficiencies and that child died by age one. She finally put a sign up on her desk that said ‘what hurts me the most is when you do not ask about my child’ The point the author was trying to make was do not isolate people that are different. This is helpful advice for anyone that knows a family in a special needs situation. Autism is not a walk in the park. Thats insulting and you used those words to hurt because you were mad at this article. We all struggle with what to say to people in difficult situations. Many resolve to say nothing because its the easy way out. Get over yourself, this is a wonderful article.

Brian Kutschke 2 years ago

Terrific Article, I could not agree more. I get really mad at the snake oil salesman. We use aba , speech and ot, the only things proven to work. All evidence for other treatments is never backed up by studies. I also get cornered by people all of the time that insist my sons autism was caused by vaccines..excuse me ?? He has always been different even before vaccines…brilliant article

Sherry Yazdi 2 years ago

I think that your inclusion of the comment of saying “nothing at all” as being the worst possible thing for someone to say is extremely self centered and narcissistic on your part. There are countless mothers and other family members who have lost children, or who have to put up with disorders that make autism seem like a walk in the park. I had respect for your blog in the past, but reading this article (rant would be a more appropriate title) has certainly allowed me to see your true colors.

chrissy 2 years ago

I think the very worst thing anyone has ever said to me about my daughter is, “Have you considered putting her in a home?”

Amy 2 years ago

I love this. As the mom of 3, one with Asperger’s and one with Apraxia/Dyspraxia, you can use this list for pretty much any dx that isn’t obviously “physical” in nature. My husband and I cope. Some days better than others. But having those who are willing to talk about it without judgment and accept our kids for who they are, those are the special people.

Rose 2 years ago

After reading another article from a family member about how my choices caused my children’s ASD I was beyond elated to find this post and may just email it to the offender. Thank-you!

Jackie 2 years ago

I get that too…people have asked me “what will you do with your son when he is an adult? where will he live? what will he do?” my response is “i will love my son when he is an adult just like i do everyday” “he will live where ever works for him…whether it be with me or not” “and he will be able to do whatever he puts his mind and effort to do just like any other child or adult”

Jewel 2 years ago

I couldn’t agree with you more!!! My 11 year old son and 9 year old daughter are both high functioning and I have heard every comment on that list so many time I wanted to scream!!! Thanks for saying it so clearly, yet kindly! :)

Rachel 2 years ago

I have autism and will say I am autistic. I also went my whole childhood saying I’m not autistic Im Rachel.

Rachel 2 years ago

Thank you! I am autistic and when I was six my mother had me diagnosed. (I have a form called aspergers) It is rare for girls to have autism and it can easily slip by without notice so no doctor believed my mom. I remember sitting in a doctors office and him asking me do you feel autistic? I MEAN COME ON!! Being six I said where did you go to school your the dr you tell me. The next doctor said I wasn’t autistic because I did well in school. Now I have six beautiful kids and guess what IM STILL AUTISTIC. But more than that im me!!

Mark Mathis 2 years ago

Great article! Hope others read this and take the advice. Thank you so much.

Gingersnap 2 years ago

I’ve got two kids on the spectrum (ASD & PDD-NOS). Lexi nailed it.

Debbi 2 years ago

This was an amazing article. If I could reach through my laptop and hug you, I would. Especially after reading 3 & 4.

I have an amazing 11 year old son who brightens a room just by being in it. He’s bright with an epic imagination. And he just happens to have autism. While it is part of what makes him who he is, it isn’t all he is.

These kids do not need a “cure” they need acceptance and understanding. After all, I think everyone is quirky in one way or another.

Mama D 2 years ago

“But there is nothing fundamentally different about me than any other mother. I am a normal mother in an abnormal situation. I do what I do because I have to, and you would too if you were put into the same situation.”

Amen and hallelujah. I didn’t choose this, and there is nothing special about me because I have a “different” son. I do what I do because I have to, and because I love him. End of story.

ShayeA 2 years ago

In my 23 years of parenting a son with severe autism, I have never come across anything like this post. It embodies every thought and observation I’ve ever had about those who have thought about and observed my family. You were spot on about everything. After years of these grimace-inducing encounters with the well-intentioned…I’ve honed my filter and grown a very thick skin. This brought so much back…revisiting was long overdue! I thank you for this gem of a read and I look forward to more of your clever, funny and beautifully crafted insights.

gracenikki 2 years ago

I agree. But mostly just because I don’t ask about other people’s kids anyway-autistic or not. But lists like this sort of drive me crazy. I think people need to just come to terms with the fact that there will always be idiots out there who don’t know how to have an appropriate social interaction. These are the same people who say this like “Omigod you’re HUGE!” to a pregnant woman or “What’s wrong with your baby?” if the child appears to have an impairment. Putting out lists like this won’t fix how those people respond, but it will make well meaning, generally kind people much less likely to want to “open up a dialog” with you because they’ll be so afraid of saying something offensive. You end your post by pointing out that saying nothing is far worse than the other offenses. If that’s the case, why write this at all?

Larry 2 years ago

But the thing I found to be most offensive were the ones who said “Couldn’t you just……….?” and bring up something so stupid and yet act like an authority on the subject because they saw something on tv. And you can never convince them they are wrong, so you just shut up and move on.

Amy 2 years ago

Okay, I loved this. I have an 8 yr. old with Asperger’s and an almost 5yr. old with Down Syndrome. My husband and I get a lot of “he’s a genius then” and “she must be an angel” and truthfully he does have his moments of genius, as long as it’s something he’s currently interested in, and she does have angelic moments as well – usually right after the stubborn strong willed “I’m not budging” moments. I am incredibly thankful for good friends and family that do get it and amazing teachers/therapists. Thank you for fearlessly posting what many of us want to say but can’t find the tactful words to do so!

brenda 2 years ago

I work with both nuerotypical children and those on the spectrum at a very young age, often before they have a full diagnosis. It’s pretty easy for me to identify a “syndrome-y” kid, and I work with families of children on the spectrum all day, but when I see a child or young adult out and about with family, I never know quite what to say….”I get you? You’re doing great? I support you?”. That all seems intrusive and presumptive. I usually just smile nicely at the kid and family, wave if it’s a little one, and move on with my business. What I DON’T do is look the other way, or stare, or rush past.

Bliss 2 years ago

How did you get inside my head? Were a decent writer at all, I feel like I could have written this word for word. The whole cause/cure thing really chaps my hide, especially once our second son was diagnosed (do they think I haven’t already lain awake hours upon hours wondering what I did “wrong”, especially since I have two NT stepsons?) The moment my life became AMAZING was the moment I let go of that crap and just started enjoying the hell out of my boys. Despite hard days, being their mom is pretty freaking great.

The Mean Mama 2 years ago

How do we offer to help without implying you aren’t capable of getting it done yourself, I am totslly willing to lend a hand but don’t want to offend or step on toes. Usually I just say, “could you use an extra pair of hands” but not sure if that’s okay?

Destinee 2 years ago

One of the few good things I can say for him-he dumped the ignorant woman on the spot. His response was something along the lines of “If I wanted custody, I’d already have it. She’s a good mom, get out.”

The Mean Mama 2 years ago

Disregard, I am on my phone and somehow hit reply to the wrong comment. It was intended for what I believe a reply made earlier

Roshni 2 years ago

I was actually rolling my eyes at yet another what not to say…post. But, all that you said made total sense! Thanks a lot for sharing this.

The Mean Mama 2 years ago

The older generation is always good for a chuckle. Like when my grandma diagnosedmy baby with colic because she cried when she held her…umm, no.

The Mean Mama 2 years ago

~’his girlfriend at the time’ ~
I hope that means he didn’t keep her around. Goodness, I am sure it is comical now, but at the time I imagine it triggered other emotions.

The Mean Mama 2 years ago

My cousin’s son is autistic, whenever displays a sterotypical behavoir they smile and remind those around him that may be unaware that “he’s on the spectrum”. I think what people mean by this question is where on that autistic spectrum does your child fall. Are they on the Aspergers end or the non-verbal won’t make eye contact with anyone end. I don’t think its a bad or hurtful question, just poorly worded. People get so much mixed and bad information that they are just trying to sort through it all.

The Mean Mama 2 years ago

I think I will read the book and then give a subtle reveiw where she will hear or read it. She gets very defensive, but after fighting autism for 10 years instead of embracing it, defensiveness is probably a safety zone. Thanks again!

Amber 2 years ago

I was nodding as I read this. My son is 11 and has Aspergers. I was told many times that he “looks normal.” This would always drive me utterly insane.

Of course, the same people would be like, “Um, what’s he doing?” when he’d start stemming or crashing into a random object because he craved feeling the pressure.

Bev Trewin 2 years ago

I loved your blog! Especially the ‘he might grow out of it’ part. My grandson has Aspergers. He’s 13 now and loves drama, so he’s a member of the local theatre company and has been given the chance to take on main characters in a few productions. I wouldn’t miss a performance if my life depended on it!! Acting allows him the freedom to be someone else and he has no problem dressing as a woman if that’s what he’s asked to do….ask him to do math and watch the sparks fly!!

Bev Trewin 2 years ago

I get your point. My grandson has Aspergers but we don’t call him Aspergic!! But to be fair to people who have no idea what this involves, it’s not that hard to calmly explain the Autism spectrum! You may be surprised by the response! Arcing up will not help anyone, least of all yourself. Keep a few copies of the many flyers available and hand them on to those who have no concept of Autism. I feel your pain and hear your anger but this can be eased a little by talking about it! Take care of yourself! Best wishes from Bev.

Jennie 2 years ago

Your blog might have had some merit, had you at least given respect and dignity. Ever hear of people first terminology?

We are not “autistic”, we are people with Autism.

Our children are not “autistic” they are children with Autism.

Your title lacks- and thus negates any opinion whether or not it had any merit by your neglect and disrespect.

Signed,

A Momma with Autism who is the proud parent of children with Autism.

elissa Masson 2 years ago

Thank you so much….I can’t begin to tell you how much reading this meant to me. My amazing little boy is 5 and was just diagnosed in January. It took so long to get the diagnosis and so many well meaning people along the way just complicated matters. Even though he was diagnosed 5 months ago, I really have just come to terms with it. My son is my son..he is smart, funny, loving, energetic, he also happens to have ASD.

Amanda 2 years ago

I just wanted to say I wish my Mom had seen this when I was younger, it might have helped her deal with the other parent’s at my school. I was diagnosed Asperger’s at 22, before that I was diagnosed with ADHD and medicated with Ritalin. I was the awkward kid who said the wrong thing and who no one wanted to play with. When I got my diagnosis thanks to a very perceptive college therapist, it was almost a relief for me. For my Mom it was no big deal, she just said “it doesn’t change you and it doesn’t mean there is anything wrong with you.” It was the best thing anyone ever said to me.
Also it is not the end of the world, I have multiple degrees, am married and have an 8 month old baby of my own. We are keeping an eye on my daughter and so far there are no signs, but even if there are I will be there for her like my Mom was there for me. After several in depth conversations with friends and my husband I realized that I literally perceive the world differently but that is ok, even an advantage in some situations. Oh and by the way, I suck at math.

Kelly 2 years ago

LOVE this! I agree 100% with everything! Having a child on the spectrum, I would love to answer any questions you might have –although Lord knows I am far from being an expert in autism in general-it’s unique to each individual on the spectrum! It isn’t rude to ask questions and be curious. I know most people mean well and want to help with their advice. But put yourself in that parent’s (and child’s) shoes before you speak! I have had many people judge, stare, exclude my children, ect. because my daughter has meltdowns and quirks and they don’t like their children not hanging out with cookie cutter perfect kids, I guess. They are missing out- my child is sweet, bright, and wonderful! Kudos to all moms out there who don’t judge and keep an open mind, there are a few!

Momchalant 2 years ago

I am so glad you wrote this. I will admit, I am guilty of saying a few of these. But now I know what NOT to say.

Hopefully I won’t step over any boundaries, but I do want to add that I believe in embracing your child for who they are. I can’t say for certain what I would do if I had a child with autism, but I can say what I think I would do. And that would definitely be to embrace my child for who they are, not what I envisioned them to be. Or what the world portrays as “normal.” Individuality brings color into this mad world.

Thank you so much for sharing this. I know it will help a lot of people not say the wrong things, including myself.

Jenn Alex Brockman 2 years ago

Everything I could say has been said in the comments already. I love that some of you are enlightened by the “insight” this mom has shared about what’s going on behind her son’s behavior.

Those stories of the families are what inspired me to start up my radio show for special needs kids and their caregivers.

Devin 2 years ago

You made me laugh out loud! I’m on the spectrum as a high-functioning person with Asperger’s and the funky sauna aside is hilarious. I’ve always hated saunas-I never know if my bits of particularity are just mine or if they’re consistent for other people on the spectrum so I always like it when I find common ground.

Carisa Miller 2 years ago

I know next to nothing about autism and have never been around a child diagnosed with it. I read your article because I wanted to hear from you about what I can do to be supportive. You laid this topic out beautifully, respecting those of us who never know what to say because we want so badly to help and say the right thing. Thank you so much for sharing.

Margaret 2 years ago

She does say at the end, “There is nothing you can say if you are well-meaning that could ever be worse than saying nothing at all.”

Missy 2 years ago

What a beautiful article and very well written.
You put together a list that a lot of us moms with kids that have autism wish we could say to people. I have heard just about every single one of those above and you hit the nail on the head.
Being a mom of a child with autism is a process and there are other things we have to deal with as a mom. But we are still just a mom. sometimes people tend to forget that.

Thank you.

LoriJo 2 years ago

Thank you! After giving birth to three slightly normal children (two have ADD and one has ODD), my husband and I adopted three special needs kids. The oldest has Fetal Alcohol Syndrome and is moderately retarded. She is 21 but is, developmentally, like a 6-year-old. She also has mild autism. The middle child, age 13, is borderline mentally retarded with AD/HD, and is in therapy for depression. The youngest child is mildly mentally retarded, has AD/HD, Fetal Alcohol Effect, and was just diagnosed with autism. She is in 5th grade but functions like a first grader. I’m so tired of people saying I’m a saint, or I must be an amazing person, or (the worst), that my children are “so luck to have me”. PLEASE, people, just offer to help!!!!

Aliece Drake 2 years ago

Holy God!!! I loved this list! From the “He’s not like rainman” to the “he’ll grow out of it” to “the vaccines caused it” I’ve heard it all too. Pretending there is nothing going on at all and he just needs to play outside more and he’d *get better* is on the top of my list also. Thanks so much for putting this all into wonderfully powerful words. I shared this so more can read and understand. Yes Yes Yes… say something to us.. ask questions… don’t bury your head in the sand. It won’t go away. My son is awesome, funny, loving, sweet, high energy, high maintenance, and so smart it’s scary. He also has meltdowns, a horribly picky eater, and loud loud loud. It’s all part of the package. He’s Autistic and I love him always!

Stacy 2 years ago

Actually, I find this kind of post incredibly helpful. I don’t have children at all but do have some friends whose children have autism. I so much appreciate the insight these posts offer into what daily life is like for parents and children both, and what they find helpful and why. I want to be the best friend I can be, but sometimes I find that my friends are tired of explaining to every. single. person what’s going on. These kinds of posts help fill in some of the gaps for me, not because they lay out the “rules” of what to say/not to say, but because I get a glimpse of what’s going on in the background, if that makes sense.

Nick B 2 years ago

Sorry for going against the last one but I say nothing at all to parents of autistic kids. Your rules are just that, YOUR rules.
You have a lot of them as it is (and I get why) others have lists as long or longer and it’s easier for me to just not bring it up.
Sorry. I don’t know enough about this to enter the minefield of emotions. Not fair, I guess but I’m more afraid of making someone mad then I am of them being upset that I didn’t emote enough.

MommaParisi 2 years ago

Thank You, I really enjoyed the article! My son is autistic and I have always said, “They are like snowflakes, no two are alike!”

A question or questions that have always irked me?

How Autistic is he? Or something to the effect of, he doesn’t seem that autistic. What? huh, wasn’t aware you go look at someone and see how autistic he is..Must have been in a new study.

Wouldn’t change anything for the world, I LOVE my life.

Melissa 2 years ago

I have only recently found out that my son has Asperger’s syndrome. Already I have people telling me that there is no way, that his “Quirks” are just him being him. They haven’t been there for the therapy sessions, his diagnosis of ADHD that has been helped by medicine but brought the other issue to the forefront. I don’t want sympathy or for him to be treated any different. I don’t need a 5th or 6th opinion. I just like sharing with my friend about the wonderful strides we are making to change the way we do things now that we know.

Thank you for this posting. :)

Amnesty 2 years ago

(On a personal note, if you say to me that “Jenny McCarthy cured her son, why haven’t you?” You’re likely to get punched in the throat. )

^^^ A million times that!!!
Before my son was diagnosed with ASD, I used to be an ABA therapist. So I’ve heard way more than my fair share of autism “cures” and “causes,” on both sides of the issue, and many of them drive me insane…but Jenny takes the cake.

Shannon 2 years ago

Lexi I love you:) In a phenomenal writer kind of way;) I have a special needs daughter. She’s blind and autistic. Everything you said is dead on. Wonderful piece. Thank you for writing it.

Marta 2 years ago

As someone who doesn’t have children with special needs or have anyone within my personal circle that does I found it very helpful to read because I don’t have any first hand experience and I’m not educated enough on it to feel comfortable talking about it. It’s nice to have a sort of primer.

And you are doing a great job. =)

momofdbb 2 years ago

My oldest has autism, the normal first thing I get is ” I bet he is good at Math !” Groan ! well ok so my son is good at math but not all people who have autism are good at math ! If the person knows the families story they assume that he hasn’t had problems with his sister dying. They seem to think autism = no emotions ! No that is so not true ! He has a hard time showing us how he feels, but I can tell when he s having a hard time. Another problem i have is people will tell me that if I just give him a “whooping ” he would straighten up and fly right ! Grrrrr!

Mama and the City 2 years ago

Any parent of any kid with a disability or disease has my most greatest respect.

You put it correctly: “Some parents are amazing without even having a kid with special needs! Some parents just plain suck, and some of those do in fact have kids with disabilities.”

Every time I picture myself in that situation (which I tend to not do for long) gives me the idea I’ll totally suck at it. I wish all parents going through that had it easier, you know? It’s hard enough the day to day with the kid, and then add the society crap?

Lot’s of hugs to you and I bet you are doing a great job!

Destinee 2 years ago

Oh, I love this list! My favorite that I heard after my son was diagnosed was my ex’s girlfriend at the time turning to my son’s father and telling him “Now you can get custody. She had to have beat the daylights out of him for him to be autistic.” Nothing like a little ignorance to liven up the day!

Patricia 2 years ago

I like to think that I’m tactful and thoughtful, but this post provided some great insight and advice for talking about autism and to autistic kids. Thank you for sharing your wisdom. Also, call me if you need me to smack the next person that brings up Jenny McCarthy to you. 😉

Anna 2 years ago

I was ma’am’d by a young guy with 100 tattoos. I was just tickled to death by that :D. Everyone else standing in the checkout line were trying not to get to close to him because he looked rough, and then he called me ma’am. I haven’t been called ma’am since my Marine Corps days and it just made me smile. I was busy checking out his tattoos and didn’t notice that the line had advanced until he said something. I complimented his ink which made him smile.

Anna 2 years ago

Aw hun, I feel your “pain”. My oldest has a seizure disorder that she will have all of her life. I’m an expert on mom guilt, she’s an expert on mom guilt (she has 3 babies of her own now) and we’re doing the best that any mom can do. Put one foot in front of the other and just keep moving forward, that’s all you can do. Most people mean well, some don’t, just walk away because you don’t need their baggage as well as your own. You’re doing well if your kids are thriving. That means you’re a good MOM. That’s all that matters.

Jessie 2 years ago

If one more person tells that DoTerra Essential Oils cures autism, and sends me links, and tries to get me to buy it, I will cut them. Thank you for expressing what is so hard to express as a mom. Good luck, there’s lots of moms who do understand, and are pulling for you!

Patricia 2 years ago

I love this post! We are struggling with our 9yr old son and are in the process of diagnosing his “quirky” behaviours. My heart breaks when I hear he has, again, been excluded from another birthday party, when no one EVER calls to invite him over, when his “friends” always seem to be unavailable (or worse, the moms make them unavailable) to come over when he calls to invite them. Don’t these moms understand that he needs some extra leeway? I know that maybe they don’t want to expose their kid to some of my son’s colorful language or aggressive behaviours, but I need someone to be able to say, “hey, maybe he’s a great kid with some funny habits and we should give him a chance”. He’s starting to notice that kids don’t hang out with him the same way as they do with other kids and its making me sad, sad, sad. :(

Tara @DontLickTheDeck 2 years ago

Amazing Lexi. Amazing.

Lexi Sweatpants 2 years ago

I love everything you said here! I think the big difference between educators like yourself and parents is that you CHOSE to go into the field. Great educators who do it because they love it honestly change the world. You become heroes, and not because that’s at all what you set out to be…but because you change lives. My son would not be where he is today without the amazing work of his teachers. I know they don’t do it for the recognition (that’s a laugh on its own). But hell, my hats are off to you.

So, sucker, I totally just called you a hero. But along with that, I appreciate so much the perspective you give. I automatically thought that people who go into special education are amazing. I guess that’s the same stereotype I dislike when people automatically assume I’m anything above mediocre just because I have kids with special needs.

Also, I too suck at math. I’d almost WANT a shirt that said it so I didn’t have to constantly ask strangers to math for me…

Lexi Sweatpants 2 years ago

I agree. I don’t carry this stuff around and genuinely write it off. Like I said in the article, I know most people don’t know what to say and are trying to be kind.

But here’s the thing, if we don’t start speaking up and saying “hey, this can be hurtful to parents of kids with autism” how will they ever know? Why not educate? Why not let people know what TO say, as I’ve pointed in the piece.

This is why I write. To help people understand the way *I* see things and what helps along with what doesn’t. I appreciate your response here, because I believe that we DO need to give people a pass who are just trying to be nice. I think in the special needs communities (my daughter has Down syndrome…so I’m in a lot of communities) we are too oversensitive. That doesn’t mean that we can’t help people understand better what we’re going through.

Jennifer 2 years ago

Agreed. This is a BS question. I think the only way they are limited is by how YOU limit them. When my Asperger’s brother was getting ready to graduate college last year my grandmother started talking about him getting a job mowing lawns. I told him to forget her and follow his dreams. Why should my parents have spent all that money and my brother spent all that time and effort to get a degree just to mow lawns? Pfft.

Lexi Sweatpants 2 years ago

Thank you. When Casey was first diagnosed, all I wanted is a cure because I didn’t want to have a child with special needs. This is a terrifically vulnerable time for parents, and it gets exploited time and time again by shady doctors, junk science, etc. People will stop at nothing for a cure- even when we know there isn’t one.

I feel bad that I was that person. That I thought for even a second it was immunizations, because that information isn’t just not credible, it’s dangerous. I’d encourage your friend to read “The Panic Virus” by Seth Mnookin. It goes over all of the vaccine vs. autism debate. It’s REALLY good.

Jennifer 2 years ago

This post made me laugh and cry because I can completely relate. I am an adult with an adult brother who has Asperger’s. He’s 22. Last year he graduated college and he’s spent the past year like every other recent graduate- working a part time job while looking for a full-time job. While he may be autistic, he does not let his autism define him. He chooses not to tell many people and refuses to use his disability as a crutch. Yes, he has his quirks but so does everyone else. He grew up when they were first starting to diagnose autism and there were definitely a lot of struggles along the way. But through it all he has been a blessing to our family and I wouldn’t want him to be anyone than the person he is.

Mandy 2 years ago

Oh that is a good one! I would probably reply with a smart “Well he is six so right now his goals like most 6 year old boys is to be Batman or a space ranger. What exactly will your child be doing in 20 years?”

Schyla Crown 2 years ago

I have an autistic child, I’m also socially awkward so I don’t always know what to say to people. I wish people would stop posting What not to say posts and just practice what they preach, Tolerance. pure and simple, No one who hasn’t been there can possibly understand, you said it yourself, The worst thing is not to say anything all, so take what someone says and again try to be tolerant. Special Needs parents need to have a tough skin so Elephant Up Mama put those big girl panties on and get over it. Your Kid needs you, who cares what the rest of the world says or dose. I’m sorry I know some will find this offensive but really Posts like This don’t help they just take well meaning people, who aren’t magically going to know the perfect thing you need to hear, who are only trying to show you they care, and make them feel Stupid and I know that’s not the point of these but it’s the result and again it’s only more of the same crap. If you want tolerance for your child you have to give it to other people. ~I’m a Mom of a special needs child what’s your superpower?

Mandy 2 years ago

Thank you so much for posting this. While I am not a Mom who has a child with Autism I am someone who has worked with people with Autism and this article is PERFECT! I HATE hearing how I must be such a “special person” to work in the field I do. NO. I see all people as people and enjoy seeing others succeed. It has nothing to do with trying to be a Saint it has nothing to do with thinking I can fix the world. I like helping people do what they like and my job allows that, and its so cool! I also can’t stand to hear when people who work in the field I do pretend to be experts and think they have the right to tell parents what they need to be doing better. I always reply with “No. They are the parent, this is not an 8-4 job for them, they know their child, they get to say what will or will not work in their household. No parent is perfect, every parent has bad days. It is NOT for us to say that they need to do more or better. It is our job to encourage and empower.”
People with Autism have some really cool and unique abilities that need to be embraced. I used to work with a little boy who loved to go to the park and play with the other kids, the only minor drawback to this was he didn’t speak (much), so when the kids wanted to play with him and he was clearly interested I would go over and assist him with introducing himself and explain that he wanted to be friends and play but he really wasn’t a big fan of talking. Kids immediately embraced this and continued on while including him! It worked out great because the new friends could natter away to him and he never interrupted. They LOVED always being the center of his attention! But because I didn’t treat it like there was something “wrong” with him they accepted him and played for hours.
I too get very angry when people act as if you just change this one thing everything will be cured! It gives parents who are scared (and like you said experiencing some pretty significant Mommy guilt) false hope, or the feeling like their child isn’t good enough just the way he/she is.
We all have things we aren’t good at, but if we were all labeled by “This is Mandy, she sucks at math, she cant even do simple multiplication in her head” no one in this world would ever succeed. Focus on the strengths, treat all people like people and watch people soar!

Kelly 2 years ago

This is one of the most amazing things I have ever read concerning autism. Thank you for this post.

Grown and Flown 2 years ago

Could I add another? Don’t ask what he/she will do when they grown up. No one knows what any kid will do when they grown up and raising this potential source of anxiety with parents does not seem helpful.

This was lovely, thank you.

Christie Tate 2 years ago

This is helpful because I don’t know what to say. I’ve blundered before and I hope to remember you words when I am in this situation again. Great writing.

Rebeccah 2 years ago

What I know about autism is not much. What I do know, is that this post is amazing. Honest, reasonable, relative and real. You have done your son and others in similar situations such a service by writing something so great. Thank you very much for sharing!

Keli 2 years ago

My question is, why do I (or anyone else) have to acknowledge it at all? You want so badly for your child to be accepted as normal or for who they are. This, to me, is exactly what’s wrong with the world. Like judging a person you see in the street with 100 tattoos, or pink hair. In plainly accepting a person without addressing their “differences” we are able to accept the differences we all have. Let it go.

Heather 2 years ago

I have a son with autism too. I think this is a great post.

Wendy Hoard 2 years ago

Amen Amen Amen!!!! Truer words have never been spoken. Thanks Lexi!

Kelly 2 years ago

I have a son with autism. I’ve come to realize that constantly being upset or offended at what people do or do not say is a waste of time. You’ve set up quite a difficult needle for people to thread when talking to you–don’t say the wrong thing, but also don’t be silent. When someone says something uninformed, I simply tell myself that they are just that, uninformed, but likely well intentioned. I don’t expect people to walk on eggshells around me. We as a culture in general need to learn to let things go. Life has become a minefield of who might be offended. If someone is saying something with good intentions and not intending to offend, we should be able to let it go rather than internalizing it or demeaning the person who said it.

Laura 2 years ago

This is fantastic. Thank you. I suspect the parents of any child who doesn’t fit the societal definition of “normal” understands what you’re talking about.

You left out one thing not to do which has driven my (dwarf) daughter NUTS: Staring and pointing and acting like the person and/or their behavior is somehow worthy of being in a circus sideshow. People with disabilities or are people first, and being treated like a person is what everybody wants, regardless of their differences!

Thank you again for this wonderful post!

Jessi C 2 years ago

Love this. Hard. Yes.

Debbie 2 years ago

Thank you Lexi for sharing what to say to parents of children with a autisum. We all need to know what to say, so we don’t blow it.

All people (and children) are special in our own wonderful way. I have a cousin that has Wilsons disease which affects the nerves system. My hat goes off to her, because even with her own disables she takes care of others with disables. It is totally amazing what she does.
Thanks again for sharing, it is very much appreciated. I would hate to get hit in the throat for saying the wrong thing. :)

Arnebya 2 years ago

Regarding #1, I can’t tell you how many people STILL refer to Rainman as their first reference toward “knowing” someone with autism. I’ve never understood the lumping people into categories. Even iwth an autism diagnosis, you’re right; each child/person will be different. It makes me think of stupid people who ask where I live, then ask if I know [random person] because sure, all black people know each other (and like malt liquor. This is so not an accurate analogy, huh?)

The Mean Mama 2 years ago

Such a refreshing read! So thrilled to find a mom who takes life for what it is. I have an aquaintance who is fighting her son’s austism like its a battle that can be won or lost. After his diagnosis she proclaimed all immunizations evil (she ignores the fact that her addiction issues could have caused bigger problems), then insisted he not be labled autistic (so everyone labeled him a behavoiral issue) they have tried hyperbaric chambers, diet, etc with no change in behavior. Sad thing is, is that the only obvious difference between him and his siblings is he doesn’t sass back!
Kids are who they are, embrace them and enjoy them (unless of course they just aren’t nice kids, regardless of disiability)
Thanks again for a great post!