My Son Was Diagnosed with Autism – What’s Next?

My husband and I, both with our inability to make eye contact or socialize in a “normal” way, always thought that our children could be autistic. Our families may not be diagnosed (beyond my ADD), but between us and our parents it’s clear there’s something genetic going on in our family on both sides.

When my first son was born, he was always a bit different. I didn’t really know how different until I had my second son who at 10 months seems “neurotypical.” While it’s too early to tell with son 2, he does all the things naturally that they say a baby should do at certain ages, whereas I always had to look at my first son for a while and ask “does he do that?”

For example, my first kid was never interested in others in the room. He would always be a bit in his own world. If there was a loud noise he might turn to look in that direction for a moment, but usually he just kept staring at whatever he was staring at. He never gave much eye contact and certainly didn’t cry when his caregivers left the room. My youngest will turn to look you in the eye when you call his name and is always looking for mom. It’s just night and day between their behaviors.

Of course all kids are different so I didn’t think much of it. But between my oldest son’s heightened sensitivity to sound, his unique obsession with numbers and letters, his ridiculously good memory for a 3 year old (he has memorized all 50 capitals and is on to the country capitals, and is reading many words by sounding them out), his lack of eye contact, his outbursts, seemingly “behind” communication skills with pronoun reversal and other challenges to communicate, I thought it was worth asking my doctor if she thought we should get him screened for autism.

If COVID wasn’t a thing maybe this would have happened sooner, but his 2 year checkup was a quick in and out where the doctor didn’t really want to spend much time with any one patient. We got a new doctor and at the three year checkup she agreed he should be screened. She was kind enough to let us skip the form we were supposed to mail in and wait months to get a call to schedule the assessment and give us the immediate referral.

A month later we. had the assessment. It was all done remote but I think I trust it as the behavioral analyst who conducted the assessment (under a psychologist who joined for the observation part of the evaluation) seemed to know what she was talking about. She asked us a zillion questions and we answered them as honestly as possible. Then she observed my son play for 30 minutes by giving me instructions over headphones so he didn’t know he was being tested. She had me do things like call his name (to see if he looked at me when I did and made eye contact – he did not), point at things on the wall to see if he would turn to look at where I was pointing (he did not, he sometimes looked at my hand by never the direction I was pointing), and a bunch of other tasks like that to confirm that he was not doing the “normal” things a kid would do a this age.

After the observation, 40 minutes later, she got back on the call and told us that he has “Autism I.” There are now 3 levels of Autism and I is the most mild. Nonetheless, it opens up a world of special services and IEPs and decisions and more decisions on what to do to help him.

While I was clearly not surprised by the diagnosis, I do feel a bit overwhelmed by what’s next. I didn’t realize that autistic children can get 20+ hours a week of therapy in their homes! The type of therapy is called ABA and from what I’ve read about it, the therapy sounds pretty awful. A lot of autistic adults say it has traumatized them and I don’t think we want to pursue that route, especially given his case is mild, though I’m learning as much about it as to make the most informed decision. There is an option for 3 hours a week of parent-led ABA in home which would be done via telehealth so we’re considering that. But I think at the end of the day the question is do we think being autistic is something bad that needs to be changed or do we want to help him embrace this personality and not try to change him (but still give him support for specific areas where he can use therapy like speech and OT/PT.)

I’m leaning towards the later. Speech therapy and OT/PT could be helpful for him. I don’t know yet if I’ll be shamed by the doctor for not doing ABA or if they’re open to parent choice. The referral hasn’t even made it back to the doctor yet, so at this point we’re waiting. I’ve read too much in 48 hours online about what to do now, and it sounds like I should contact the school district for a separate evaluation to see if he qualifies for services in the district. He’s quite happy at his co-op, play-based preschool right now, so I really don’t want to to take him out of it.

Everyone says to me “oh but he’s so smart” and I have to remind them that there are a lot of kids who are smart but also have disabilities and without the right support those disabilities can prevent them from achieving what they’re capable of. At this point in my life I’m not even sure that matters so much as just making sure my son can live a happy life and support himself one day. I know what it’s like to struggle with being neurodiverse without the tools to properly handle this as an adult and it’s not fun. So I want to support him but also not make him feel like anything about him is wrong or broken or needs to be changed. I think it’s very important for him to learn and know he is fine the way he is. And everyone can work to improve themselves no matter how their mind works.

It all sounds good in theory, but how the hell do I I manage this working full time and also raising another kid? My mom was a stay at home mother and managed my sister’s challenging journey with the school system (eventually putting her in private school because in third grade she still couldn’t read) and she spent hours upon countless hours figuring out what to do, getting a lawyer to write letters to the school, doing all sorts of things that didn’t work all that well anyway. Who has time for that these days? My friend is currently navigating her school system with an advocate and she has a much more flexible job as a small business owner so she is able to invest time into that. I’m already overwhelmed thinking about how I will schedule and coordinate a small amount of therapy for my son even if we just do weekly speech and OT and PT — plus ensuring my father-in-law, his primary caregiver during the week, does all the things therapy tells us to do.

Can’t my husband do all that? Maybe. He seems somewhat onboard. He knows our son’s behavior is getting challenging. It was good for him to hear the diagnosis I think so we can be on the same page. We can work together to help him and agree that our ASD kid does have some challenges but we can get through them as we are now part of this massive community of parents with ASD kids.

I do wonder, like all parents wonder, if I did anything to cause this. They say kids born with fertility drugs are 2x more likely to have autism. No one knows why. Well, my first son was conceived with drugs to help me ovulate and my second son was conceived without any drugs. My first son also had a longer birth and had breathing issues at birth while my second son had minor breathing issues at birth but never had a lower oxygen level. Did any of these things cause my first born to have autism? How about the fact that I was so tired trying to keep my job and be pregnant that I had a bit too much Coke Zero during the pregnancy? Will they figure out that Coke Zero is causing autism? With my second son I stuck to iced tea. Did my behavior cause his autism?

And even if it did — I know so many successful and smart autistic people, I’m not sure if this is a “bad thing” at all. It just means he is different. And what child of mine would grow up not being different? Different is ok. Different is good. Being normal is boring.

But I do want him to be happy. I worry that he will be picked on in school. So far in pre-school the kids are nice (or just ignore him.) I know there are challenges ahead. Do I have the time to be the mom I want to be to support my children?

 

 

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