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 (CLICK HERE): 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 (this week): 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
Last week I talked the first part of the autism spectrum disorder diagnostic criteria "A. Deficits in social communication and social interaction." You can see it HERE.
The actual DSM-V ASD diagnostic criteria can be seen HERE. Here is how my 24-year-old Level 1 awesome son fits in to the second part: B. Restricted, repetitive patterns of behavior, interests, or activities.
Disclaimer! This is what it looks like in MY SON, and the old adage hold true: If you've met one person with autism, you've met one person with autism. Experiences are unique, so take this for what you will. It was just a fun exercise for me to go through!
B. Restricted, repetitive patterns of behavior, interests, or activities (at least 2 of these required)
1. Stereotyped or repetitive motor movements, use of objects, or speech
Normal speak: Could be motor movements like toe walking, hand flapping, jumping up and down, repetitively doing anything with the body or with objects, or it could be speech like echolalia (repeating back what someone says instead of answering or responding), repeating words, a fixation on getting someone to do or say something For Dude, his motor pattern has always been hand wringing when excited like during playing video games or watching a preferred show or 'tuber. He controls it when in public or around other people, but I can see his body "tensing" during those trigger times. In private, I assume he's comfortable enough "stimming" and releasing as necessary.
To be clear, I don't care if he stims in public, either. His choice to hold it back is up to him. He so wants to fit in with his NT peers that he tries to control these idiosyncrasies, and I allow him that choice.
Years ago, he moved out of the echolalia stage, but today he still has some oddities in his speech that may never change, and that's fine. He communicates well enough as it is. :)
Accommodations for him would be to be forth-coming about being autistic so that people understand it's just part of who he is. I think he is actually becoming more open about his autism in recent years, and I think that will help him be accepted with all his quirks.
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior
Normal speak: distress at changes in routine or plans, rigid thinking, rituals that need to be adhered to, restricted eating patterns (also part of #4)
Ah, this is a BIG one for us! Even a change in the smallest thing can really frustrate Dude. It's like once you say something's going to happen or go a certain way, you've written it in concrete with liquid gold and there's no changing it. I mean, he's learned to adjust and accept over the years, but I can tell it's REALLY HARD for him.
What I've learned is that if something needs to change in his life, the more time he has to adjust to it, the better. It also helps if we make a plan but tell him it MIGHT change (even if we don't think it will). That at least gives him a heads up, and then he can EXPECT the change.
Accommodations for him are to keep an updated schedule so that he doesn't forget something and then it's sprung on him, but also for him to work on accepting that changes do happen in life and to "go with the flow." Again, being open about his autism and letting, for example, an employer know that he likes things the same will help his environment suit him best.
3. Highly restricted, fixated interests that are abnormal in intensity or focus
Normal speak: unusual interests in things that are 1) not typical for the age or 2) not typical for anyone, and then an intense focus on such things So I've worked with many kids over the years who have had some interesting interests: vacuum bags, ceiling fans, straws and shoelaces, and more "typical" but common interests such as dinosaurs, space, Thomas the train, letters and numbers, and, of course, Pokémon. That last one is probably THE most common thread among all the kids I've worked with on the spectrum over the years. So. Much. Pokémon.
Early on Dude was obsessed with game shows. His favorites were Wheel of Fortune and Who Wants to be a Millionaire (he was the early reader/math guy so the letters and numbers were right up his alley). Pokémon hit when he was about 4 and is still going strong 20 years later. Difference is, now, he knows it's not "normal" (I use that term very loosely) for someone his age to still like it (it's probably more common than you would realize, BTW!), so he does it more in private. Again, it's fine with me. As long as his interests are not holding him back from a career, being able to live independently and successfully, then it's fine. I'm not even sure it would hold him back from a relationship as long as he finds someone of a like mind. Might be harder to find that person, but there's no rush.
Accommodations for this are mostly that he learns when it's OK to engage in gaming or talk about it and when it's not, and that anyone who is in a relationship with him needs to know that it's important he has time to engage in his preferred interest to keep his happy bucket full. If he doesn't have enough time to decompress doing a preferred activity, his anxiety and inability to copy with life shoots through the roof.
4. Hyper- or hypo-reactivity to sensory input or unusual interests in sensory aspects of the environment
Normal speak: Uh, all the senses are out-of-whack, like some are too sensitive and some are not sensitive enough. Wide plethora of symptoms here
For Dude, it's mostly hypER-sensitive senses:
Touch: rain actually hurts, can't have too hot of water in shower or bath, sensitive to pain, wears soft clothing, can't have tags scraping his neck
Sight: really sensitive to bright sunlight, needs sunglasses or a hat, for sure
Sound: overly-sensitive to sounds, cannot filter out background sounds, says he hears everything at about the same volume around him, super overwhelming, especially in a crowd or with loud noises
Smell: smells everything (except his own stinky farts; those don't seem to bother him, for some reason)
Taste: prefers bland foods, can't stand anything that has "too much flavor," he doesn't even like sweets! Definitely not ice cream (cold AND sweet).
So this is probably one of his biggest areas of need and not one we really made much progress in over the years. I mean, he has been taught some amazing behavioral strategies that make it possible for him to live a fairly independent life in this NT world, but his sensory sensitivities are still pretty profound. At the same time, they don't really hold him back. He can choose certain clothes to wear, he can use an umbrella, he can wear sunglasses, he can choose his own food, he can wear noise cancelling earphones if he chooses. So while this is not an area of huge progress over the years, he has learned to function with those differences which is awesome.
Alright! Almost there! Check back next week for Part 4: Breaking down the diagnostic criteria -- All the rest to wrap it up. This has been a great exercise for me to go through, to see that while it's been a long and often difficult road, he's chugging along pretty good. Maybe by the time I finish the series out next week, I'll be able to report if his training program is complete and he's been picked up for his first "big boy" job! Very excited for him!
Pulled together a bunch of special education data collection forms and systems to share. More to come! But check out the collection in the Store HERE or in my TpT store HERE.
