A Letter to the New Autism Parent

mom-hugging-little-boy

Welcome to Club Spectrum!

You didn’t want to be here, but don’t feel bad about that — nobody signs up for this gig. But think of it this way: At least you now know what the hell is going on now. And here are some tips to help you navigate the way:

1. Pace yourself. You are about to start a never ending marathon. Know when to take a break. Embrace the couch and some bad TV. Or if you are one of those gym goers, do that. Avid reader? Go fire up that kindle or go old school and buy a few books. You’re going to have a lot of time in therapy waiting rooms. Might as well enjoy reading some check your brain at the door novels. Know it’s okay to get absolutely nothing done on some days. Or weeks.

2. Get off the Internet. It can scare the crap out of you. Seriously, stop playing Dr. Autism Google. You’re looking for the autism cure needle in a Internet haystack. Step away from the search engine.

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3. Get on the Internet. I know, opposite advice. Here’s the twist. Get on social networking sites. Talk to other parents. Get to know them. Not just what they did to treat X Y and Z. You’ll get a better understanding if those choices are right for you. Autism can make parents feel very isolated. Sometimes it is hard to get out and network. Facebook, Twitter, and online groups are awesome. Mainly because when you are in the dark on your kid’s iPad hoping like heck the melatonin will kick in soon, you can chat away. (Don’t you go Googling melatonin yet. You read this all first buddy!) Autism parents/caregivers are always awake somewhere on the planet.

4. Be prepared to hear a lot of advice you did not ask for. Warning, it never ends. I find sarcasm and raising my eyebrows over my glasses helps a lot.

5. Respect your elders in the ASD world. Now don’t go taking their world as gospel, but recognize what they do works for them. You’ll see why as you earn your stripes. The kiddo is 8 and we’ve been dealing with all things autism since he was before 2. Trust me newb, what you are telling me to try, we’ve done. Seriously, do you really want to be the type of person I just described in item number 4? Don’t be that know it all parent out the gate. Remember they have been sleep deprived much longer than you. They will be quick to shut you down.

6. Accept the fact that you are going to try stuff that is totally not going to work. That miracle thingie you just read about in a chat group won’t do jack all for your kid. Meanwhile every other kid who has, is thriving. It’s the luck of the draw with this folks. You meet one kid with autism, you have only met one kid with autism. Some cures/therapy/meds will be duds.

7. Autism is effing expensive. So when Grandma or Uncle Frank wants to know what your lovey wants for their birthday, CASH IS KING! Don’t be afraid to ask for therapy and or lessons for something as gifts. These folks care about you and your kid. They’ll be happy to know what they bought is actually getting used. Not sitting around collecting dust.

8. Accept that some folks who buy gifts for your kid won’t do the above. You’re going to get a lot of gifts that your kid won’t even be remotely interested in. They meant well. They knew it was a hot toy. Save it. You never know. Maybe in a year or two, they might like it. Or donate it. Regift it. Return it for therapy cash.

9. Be open to doing stuff you think is ridiculous. You really just don’t know what your kid is going to respond too. Give it an honest college try before you realize if it’s a hit or a miss. This means diet, meds, therapy, supplements etc. Just try.

10. Take your kid out everywhere. I’m serious. It may be small trips at first, but it is the best thing you can do. You’re teaching them coping skills. Life happens. People have to food shop, go to the bank, post office etc. You would be doing it anyway, if they didn’t have autism. Know their limits of course. Baby steps first. Today, it’s a trip to buy milk. Another time, maybe it’s a trip to the pet store and the library. Life from now on will take military like planning. Warn them what’s coming, but go about your business. They smell fear. Seriously, the more panicked you are, they will turn that dial to “11.”

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11. Allow yourself a pity party. Moan, cry, rant and rave and do it when you need too. More than once. Just remember you still have a kid that needs you. So, don’t dwell in it too long. If you find yourself doing it to far to frequently, know when to ask for help. Be it from a partner, family member, friend, or doctor. Yes, this isn’t what you planned but it’s here. So, now what? Exactly.

This isn’t about getting through it to an end point, this is your life now. This is your new normal. I can’t promise it will get easier. You will just get better at dealing with it. Be it through humor, prayer, yoga, crafting, blogging, or a thousand other escapism activities. You will do this. You can do this. Remember for as hard as you are working, so is your child. So now and then, relax and just order another side of fries.

Related post: 6 Perks to Having an Autistic Child

About the writer

Autism is a trip I didn't plan on, but I sure do love my tour guide. It's better to laugh than to cry. Mainly because I got distracted by the free samples at Costco and forgot to buy tissues. So, come join this one mom's adventure with a side of saracasm (and fries) on my blog, Autism with a Side of Fries or on Facebook and Twitter.

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Cate 7 months ago

Great write up. I’d like to throw in, as a seasoned vet/parent of an ASD 10 year old boy, try not to do your child the disservice of underestimating them. Too many people they come in contact with will. Set the bar realistically high and you might be surprised how much they can achieve:)

Sarah 11 months ago

My 2yr old can only say 5words she throws herself on the floor and headbutts the floor she don’t feel any pain and she starting to lash out and bite stuff and she swings herself backwards and forwards and she shakes her hands and she walks on her tiptoes and when call her it’s like she can’t hear u and she goes into a world of her own and she rather play on her own and if her 10mth old sister has 1 of her toys she takes it and gives her sister 1 of her own toys and she has started to squeal and pulls at her hair and smack herself on her head is this normal

Michele Sorg Kearns 1 year ago

There are times when people stare in stores at my son that I just want to say he has autism….what’s your excuse for being so rude?!!

Donna 1 year ago

12. Connect with adults on the spectrum. I’m sure they would love a new friend, and to help you understand your child better.

Allie@thelatchkeymom 1 year ago

Great advice, all of which I think I have doled out myself:)! Especially the “stay off the internet” part!

Jennifer Furnish Kinney 1 year ago

Diary of a mom. Head there now.

Kay Francis 1 year ago

I prayed so much. Please God fix him. Then the revelation: I was the one that needed fixing! Things got a lot better after that. BTW y autistic son is 28 years old.

Amanda Sullivan-Kramer 1 year ago

Before you walk in, write your child’s name down on a piece of paper, after you hear the diagnosis, hold said piece of paper and say the name! And remember the child is the same as s/he always was but the label is what gets you services! The child hasn’t changed!

Kimberly Moscariello 1 year ago

Welcome to Holland….
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things …
about Holland.

Cynde Rothenburger 1 year ago

We lucked out and happened into cancellations.

Jill Holzedl 1 year ago

Thank you for your honesty. My son is 4, diagnosed at 3, but knowing he wasn’t typical by ay least 2. Pediatricians always downplaying my concerns. This is what I fear, that he WON’T improve with age. We’re doing.all the therapies & special preschool, & seen results. I try to stay in the present, I struggle with the guilt & fear daily.

Lucy Imperial 1 year ago

I wish I had known before. My son was diagnosed when he was 12, all those years putting him in time out and being too strict without knowing he couldn’t control himself. I’ve regretted so many thing I said and did.

shawna 1 year ago

I am so sorry she is having such difficulties. It’s not too late though. aspergerexperts.com might help. I can offer other thoughts but the site mentioned would be a good place.

shawna 1 year ago

Exactly! I think one of the reasons why some of us have not been diagnosed is before the “science” was just starting to see, identify, and learn about it. My dad is bipolar (I believe though he has never been diagnosed as such.. my daughter is a diagnosed bipolar)

shawna 1 year ago

Ya. Meet them where they are. Learn about them. What motivates them. aspergerexperts.com is a site built by two asperger fellas. They can help you. I’m not affiliated with them in any way. I have an asperger’s boy and found them to be helpful in understanding my son. Finally got to what works with the boy somewhat but he IS a work in progress. What’s really frustrating are the lack of aid and services out there and don’t count on your state gov’t helping you. I know mine won’t.

Amy Snipes Jennings 1 year ago

I love the phrase “If you have met a child with autism then you have met one child with autism.” I have worked some with kids who are on spectrum, from mild to severe and in between, and they are all so different in what they respond to and how they need to be treated. There is no magic way that works for all of them!

Lisa Lamont 1 year ago

I wish at 2 when something was going on….a dr was there……until age 8 when all hell broke out in school and my child was labeled as a bad child…then he got his diagnose as aspergers

JohnandJenny Chain 1 year ago

Proceed with caution, but do check this out–it *may* be relevant to your situation… http://www.moleculera.com

Nancy 1 year ago

Where can I find an online community of AU parents? I desperately need to connect with other mothers.

Christina Schultz-Jackson 1 year ago

My daughter just turned 18. She was officially diagnosed with Aspergers when she was 6….I need something was different by age 2. Anyway. …I feel like the biggest misconception for parents is that this will get better with age….. for us, our daughter is worse. I am so disappointed. Beyond aspergers though my daughter was recently diagnosed with borderline personality disorder as well as other mental issues. So. Hard.

Melissa Ortiz 1 year ago

My daughter is eight and on the spectrum. I’ve learned she is who she is, I have to change my expectations. She’s happy. Also learn what the triggers are that set them of and work with it. If she’s tired she can spiral, a backpack forgotten at home means she will be late to school she won’t walk in looking different from the other kids, etc. We have her in gymnastics and it has been wonderful for her, it gives her a sense of pride, it gives her a topic to talk about, and most importantly it Helps deal with some of her sensory needs.

Susan Marie 1 year ago

Exactly where I am at. Diagnosed my son on June 3. He is 5.

Lioness Kelly Noneya 1 year ago

Thank you for this

Kristen Donohue 1 year ago

Also, never ever give up hope. There are endless possibilities for growth, change, and pure joy. It is a different path, there is no denying that but in some ways it’s a beautiful path. You will need to be strong, determined, and willing to grow yourself. If you watch and listen carefully, you will see the beauty and the lessons that are in right in front of you. Your child is still the same sweet, quirky boy/girl that they were before you got the diagnosis. One of the most startling things that I’ve learned is that, although he seemed to be “in his own world–not taking anything in,” he was. He was taking it all in. He tells me stories about pre-K and this is now 5 years ago. Presume competence. They deserve your hope and your advocacy. While feeling sad and throwing a pity party every now and then may be necessary, try to stay in the positive. For me, it has made all the difference. xoxo

Natasha Blank-Jimenez 1 year ago

My son and I got bit by a tick and got Lyme disease and he got horrible OCD symptoms overnight…now he’s sensitive to strep and has PANDAS too. While my child is not on the spectrum he does have some overlapping features and I know the struggle. He was in kindergarten last year, read at a 3rd grade level, yet was afraid to play with other kids because they have germs and might get him ill…lovely OCD right there. It’s frustrating, but he improving on antibiotics and OT, just as spectrum kids improve with therapies. Some people give me strange looks when my 6 year old freaks out in Target because he doesn’t want to stand in line #4 because 4 is a bad number today…but I have said In a snarky fashion… Take a picture…it will last longer and it usually gets the job done.

Mary Kai Taylor Brandenburg 1 year ago

Lori – and some won’t believe the truth even if you whip out the official diagnosis and shove it in their face. Deep breaths and faith in what you know to be true. And lots and lots of prayer. The people that show kindness and empathy will bring you to your needs in gratitude.

Shannon Klein 1 year ago

I really love this ^ thank you Joanna Deacon!

Kristen Donohue 1 year ago

I think it’s important to listen to autistic adults (yes, many prefer this to “adults with autism”). In my opinion, they have more expertise regarding autism than anyone else. No empathy? There are countless articles written by autistic adults that refute this. Start with “The Thinking Person’s Guide to Autism.” This is a fabulous book. Also, check out the Facebook page, “A Diary of a Mom.”

Dee Ditzy Dee 1 year ago

My son and I are just going through this now ! Heart breaking but liberating all rolled into one if that makes any sense ? To actually finally KNOW. Thank you so much for posting this ….
To all patents dealing with this , much respect to you all , we have amazing yet exhausting kids (although my other three are exhausting too …damn I’ve been exhausted for 20years lol) sending strength , and support !!!

Dani at Birdhouse For Autism 1 year ago

Oh, wow! I love this post. Of course, my favorite part is about meeting an incredible network of support online. Nothing feel setter than knowing I’m never alone.

Cindy Houston 1 year ago

I wish I’d known to get the diagnosis right away. I knew he had autism, but didn’t see a need for the diagnosis because the school and teachers were working with him. Come middle school, we hit a wall and then it became a fight. I had to start with finally getting the formal diagnosis, (which was a blow to his ego even though I had always told him about it and why I felt he has it, so nothing new, but now it was official and real), but then the fight was to get the school to admit that his autism was really affecting his education. It literally took the whole school year to finally get him on a formal plan. The biggest part of it was how hard it was on him. Broke my heart.

Emma Eaton 1 year ago

I wish I’d known that the diagnosis can cause a tilt shift in your world whereby some people you thought you could trust and rely on forever will silently bow out of your life and others you’d never have expected will appear to shore you up. There is NO SHAME in receiving a spectrum diagnosis for your child, but in the early months it may be easy to feel like you’ve done something wrong.

And above all else – remember that your kid is still your kid first. They’re the same kid they were before you got a diagnosis, but now you’ll have some extra support to figure out how to make life easier for you both.

Charlotte Lottie Heymeson 1 year ago

Just remember your child is amazing !! And you are an amazing parent !! Also laugh a lot and ignore ( or have witty come backs )when people criticise x one stuck up women stared at my son whilst he was flapping in a shop then asked ” what’s wrong with your son ” I simply replied ” there’s nothing wrong with him , obviously he’s try to fly”

Joanna Deacon 1 year ago

Why you? Because you may just be part of nature’s beam-up plan. This may be small comfort, but knowing that the idea in article in this link may have something to it can bring a sense of acceptance of Autism, even as we must do everything on the environmental and societal level to remedy the things that are making so many autistic children categorically and unnecessarily ill. https://www.facebook.com/photo.php?fbid=682094478536606&set=a.531599873586068.1073741826.531491710263551&type=1&theater

Joanna Deacon 1 year ago

Nobody signs up, no, not for the physiological comorbidities that can arise, borne of highly sensitive nervous and immune systems and the mutations upon us that are happening in real time (don’t worry, nature knows what she’s about, even if we feel helpless and in many ways are; Autism is a transition). Scientists have found that Autism parents almost without exception have some autistic traits themselves, but have not been diagnosed either due to oversight, no real need for profiling (although many need to be diagnosed post 40 when the energy for coping strategies starts to fall short), ignorance as to how Autism manifests in women, or fear of taking problems to a psychiatrist, which even when you do so are often put down to depression, neurological comorbidities (OCD, ADHD) or to schizophrenia (most autists were diagnosed as this prior to the coining of ‘Autism’). The reason parenting children on the spectrum is both a blessing and a curse is a) we are like our children (and can often relate, where the child is highly functional at least) and b) we are like our children (sensory overload and fatigue are therefore issues for most Autism parents, which is yet another reason for good support systems and giving ourselves a break sometimes). If you are an ASD parent, understanding how to manage yourself, in terms of what traits you yourself have, can help in managing the same traits in your children – or empowering them. For adults coming to diagnosis, there is often a long process of deconditioning that has to be embarked upon, in which we learn to differentiate between learned behaviours in ourselves and the behaviours that best suit our cognition. It’s a journey of discovery that can be full of surprises and very liberating indeed. <3

Cynde Rothenburger 1 year ago

How long it can take just to get a diagnosis. Friends have been waiting for a year and a half. If you don’t speak up, no one else will. Advocate, advocate.

Mary Kai Taylor Brandenburg 1 year ago

Meet them where they are. Accept the fact, early, that parenting a spectrum child goes against most of your instincts. Also, follow your instincts. Forgive yourself for anger and mistakes. Spend no time at all asking “why me”. It’s a complete waste of time and only leads to bitterness.

Elizabeth Ann Garrison 1 year ago

I wish I had known to use my voice. To speak up when I felt like something wasn’t right, instead of letting professionals tell me I was just a young mother and didn’t know how to raise a child.