A Letter to the New Autism Parent

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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

Comments

The Scary Mommy Community is built on support. If your comment doesn't add to the conversation in a positive or constructive way, please rethink submitting it. Basically? Don't be a dick, please.

  1. says

    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.

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    • shawna says

      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.

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  2. says

    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

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    • shawna says

      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)

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  3. says

    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

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  4. says

    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”

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  5. says

    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.

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  6. says

    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.

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  7. says

    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 !!!

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