What Autism Spectrum Disorder diagnosis is in "normal speak" and what it looks like in my 24-year-old son with Level 1 ASD
Part 1 (this week): Quick intro before we get to the diagnosis
Part 2 (CLICK HERE): Breaking down the diagnostic criteria Deficits in social communication and social interaction
Part 3 (CLICK HERE): Breaking down the diagnostic criteria Restricted, repetitive patterns of behavior, interests, or activities
Part 4 (CLICK HERE): Breaking down the diagnostic criteria All the rest
I decided a series of posts for this would be best. It's too much to wrap my head around all at once, and probably too much for you to read! But I know when I was parenting the boy when he was younger, I would have LOVED to have someone a few years ahead of me tell me what life was like for them. Who knows. Maybe no one cares but me. It's cathartic, anyway, for me! Come back over the next few weeks to get the rest of the series! I will go through the actual medical diagnostic criteria and explain what it looks like in my son (now 24). Might be interesting. Might be toilet reading. I won't judge.
Quick history. Dude was diagnosed at 2 with what would probably be called Level 2 (middle of the road) autism (criteria was different back then). He had delayed speech, limited social interactions, lots of repetitive behaviors, and plenty of challenging behavior. He was in intensive ABA until about 8 and then moved to a lighter model until middle or high school. He probably moved into Level 1 autism (what used to be called "high-functioning" but we don't really use that term anymore) around middle school which is also the time he went from an IEP to a 504 (less about special education services to simply accommodations to get his needs met during the school day). He stayed on a 504 through high school and even needed/used accommodations through his college years. He lived independently with roommates and even had a couple friends in college. He struggled with organization, hygiene and keeping his apartment clean (don't all young men? ha!), pushing through difficult classes (he tends to just give up when things get hard), and balancing a full schedule (he would get stressed out and shut down for long periods of time).
If you met Dude for the first time, you would find him a little awkward, probably needs a shower, but nice and polite and conversational. It's like you couldn't quite put your finger on it. I've said before, upon first meeting, he appears "just this side of normal." His challenges are pretty well masked superficially, but they exist in the form of anxiety, depression, difficulty with organization and perseverance, interests in things that you would expect more of a young adolescent, and lots of sensory differences that affect all those things.
He doesn't generally form deep relationships with anyone other than family. I think he's capable, but he hasn't really found anyone that is similar enough to overlook some of his unique tendencies and mannerisms, but I think the biggest thing is that, although he says he wants to get married and have a family (for example), he doesn't actually have an internal need or drive to find that someone. Relationships take work and insight, and lots of the skills listed in the diagnostic criteria don't come naturally to him but are vital in creating that deep relationship.
I believe he will find someone; I think it will take time and the right person. He wants it, and I believe it will happen.
I believe he will live independently. Right now, he is home during a training program for a career starter job in the software engineer field. They will send him somewhere soon for a first assignment, and I will go and help him get set up.
I believe he can be successful in a job. However, it will have to be the "right" job. He's starting out in a field now, and I think it's a good field for him, but I hope the actual JOB he lands will be able to see him for who he is on the inside and not his outward challenges. It will need to be a company that values neurodiversity and is patient and caring but also will be able to hold him to high expectations (because he's capable!). A mentor at the company would be good. He's only starting this journey, so I don't know how it will pan out! But we'll be here as a soft spot to land if he needs it.
Some of the accommodations I think he will need going forward for independence:
A housekeeper. While he knows how to clean, he 1) doesn't really do a thorough job (he's not alone in that, I'm sure), 2) doesn't "see" when things need to be cleaned, and 3) doesn't really seem to care if things get gross. It's just an easy accommodation for him in life to just hire someone to come in maybe twice a month and do a good once-over in his living space.
Meal help. Whether this is a meal service where it comes in a box with all the ingredients or hiring someone to come in and cook a week or two of meals for the freezer, he will need some plan for eating. Otherwise, he will eat pizza, corn dogs, and chips every day and have all the health problems associated. When he is presented with a simple meal (he's a meat and potatoes guy), he will eat, but he doesn't really think ahead enough to plan and implement.
Down time. He will need time daily and on the weekends to do what he wants to do (which is typically screen time). If he doesn't, his stress bucket gets full, then little things can send him into a shut-down for days.
While he's new to a career (so pay won't be great to start), he would still do best to live on his own as opposed to with a roommate. He's just a solitary creature by nature, and with starting out in a career, I'd like to see his stress level as minimal as possible on the home front. Even if it's a studio apartment, he'll be happy with that. He doesn't need much! If we need to supplement his income to start so he can do this, we will.
I hope he finds someone IRL of like interests that he can start having a real friendship with. Don't care if it's a guy or a girl, if it's a friendship or more, but someone who genuinely shares interests with him so he can have that connection with someone when he's away from us. This might mean that he must force himself to participate in social situations until he finds someone to connect with. So glad he is a church-going guy as I think that will help him do this! And it's not just that I want him to have "someone," but those skills to interact with someone in a deep, meaningful way will help him in all his interactions; at the store, at his job, with work associates outside of the work day, at church. Everything is intertwined with social interactions, and the more he does it, the better he gets at it!
You might be thinking, "That's what most young men launching need!" Yes! For him, it's just like he needs just that much more. He needs more planning, more patience, more time to acclimate, more time for self-care. He does NOT need more pizza. But I digress.
Next week, we will start in with the diagnostic criteria and what it looks like for a young man who is more on the independent end of the spectrum. Check back!
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