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Autism in Adults PART 4

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Autism in Adults...

Parenting a young child with autism comes with all sorts of challenges and joys, but they grow up! And parenting doesn’t end when they turn 18. Parenting an autistic adult has brought NEW challenges and NEW joys. Read more in this 4-part series of about what autism in adults looks like.

What are the signs of autism in adults?

Last post I talked the second part of the autism spectrum disorder diagnostic criteria “B. Restricted, repetitive patterns of behavior, interests, or activities.” 

The actual DSM-V ASD diagnostic criteria can be seen HERE. Here is how my 24-year-old Level 1 son fits in to the rest of the criteria.

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! (Read about his own thoughts on autism that he wrote when he was in 5th grade.)

Here we go with the last of the official ASD criteria:

C. Symptoms must be present in the early developmental period

Normal speak: The diagnosis is not intended to include a child who was developing normally for the first many years, and then a traumatic event happened, and, as a result of that trauma, they developed similar symptoms. There are, however, many cases of toddlers losing speech or retreating socially which are common markers for autism, but these loss of skills can't be pinpointed to a certain event.

square peg round hole meme

Dude had red flags his first year when I look back at it. He didn't nurse, he was very colicky, rides in the car were the only thing to settle him, he had what we called “the stare” for long periods of time. However, by one, he had a couple of words, he did have good back-and-forth face-to-face engagement, so we didn't think much of it. For him, by 15-18 months, he started obsessing on the alphabet, lost his couple of words, and became very routine-needing and ritualistic. He was reading and spelling by 2 but had very few functional verbal words, so we knew something was different. He got the diagnosis just after his 2nd birthday.

This part of the criteria is just meant to say that a parent can look back and see those little markers early on, even if we don't know exactly what it is, yet. Red flags? Talk to your doc. Ask for an evaluation to be sure. There is NOTHING lost if your child isn't on the spectrum, but time IS lost if he or she is and you don't know until much later. Resources are out there if you find out you're part of the club!

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning

Normal speak: Do the challenges impede the child from enjoying typical interactions and experiences that his or her peers do?

autism meme

I remember Dude's first birthday party. You know, the one with the hands in the cake? We had some family over, so it was a bit loud and crazy, and I have this picture of him sitting in his high chair with a cake in front of him, not touching it, and he was just “lost.” He looked so overwhelmed. I remember I kept saying, “Oh, I think he's tired” when I knew he wasn't. It was the first time I remember worrying that something was wrong.

As years went on and his symptoms became more clear, the gap between his development and his peers increased. It would be many years before that gap sort of “stabilized” and his trajectory was similar but just behind. There were a lot of expected but missed or delayed milestones, but there were also many huge wins and accomplishments; some typical, and many unexpected and amazing! Like reading at 2, knowing Pi to hundreds of digits around 8, doing Calculus at 12, but also a sweet disposition, always willing to help when asked, a kind and gentle heart.

Dude today is still a kind-hearted young man, he is affectionate with his family, he has a strong ethical code that he lives by. He still struggles with social interactions in the form of misunderstanding social cues, knowing how to seek out and bond with new people, how to navigate difficult situations like romantic interests and employment issues. He will be able to live independently but will need some accommodations.

E. Not better explained by intellectual disability or global developmental delay

Normal speak: Many of these symptoms in the criteria can also be observed in other disabilities or differences. For example, a toddler who is hearing-impaired may not respond to their name consistently, but that isn't a marker for autism, it's the result of the hearing impairment. A preschooler with a traumatic brain injury may not respond to social overtures by peers not as a result of autism but as a result of the brain injury. So other explanations for the symptoms observed need to be looked at through those lenses.

Dude did not have any other disabilities or developmental delays that we observed.

The diagnosis should then also note if there is an intellectual impairment, a language impairment, any other neurodevelopmental, mental, or behavioral disorder, with or without catatonia, or associated with a known medical or genetic condition or environmental factor.

Dude was given the diagnosis before this part of the criteria was included, but if it had been, it would have included a language impairment, behavior challenges, no catatonia, and no known medical or genetic condition.

Finally, the criteria asks for “severity level.” The diagnosis gives the Level of Severity on a scale from 1 to 3 with 3 being the most impacted, needing the most intensive supports and 1 being the most independent with fewest supports needed. Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

autism level 1
autism level 2
autism level 3

Level 1 is defined as “Requiring support.”

  • Without supports, social communication causes noticeable impairments
  • Difficulty initiating social interactions
  • Atypical or unsuccessful responses to social overtures from others
  • Appear to have decreased interest in social interactions
  • Inflexibility of behavior interferes with functioning
  • Difficulty switching between activities
  • Problems with organization

Level 2 is defined as “Requiring substantial support.”

  • Marked deficits in verbal and nonverbal social communication skills
  • social impairments apparent even with supports in place
  • limited initiation of social interactions
  • reduced or abnormal responses to social overtures
  • Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts
  • Distress and/or difficulty changing focus or action

Level 3 is defined as “Requiring very substantial support.”

  • Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning
  • very limited initiation of social interactions
  • minimal response to social overtures from others
  • Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres
  • Great distress/difficulty changing focus or action

I like to think of Level 1 as the old Asperger's kiddos, Level 2 as my run-of-the-mill intermediates, and Level 3 and those with limited or no verbal language and don't yet use a device and/or those who need the most extensive support.

Dude probably would have been given Level 2 when young and probably moved into Level 1 around middle school.

As an adult Level 1, he can live independently with minimal support, may struggle with employment, may have a very small group of close friends but won't be the “life of the party” (fine by me!), will (and certainly does!) enjoy time alone and doesn't need social input. He probably appears shy or an introvert, but he's not really that. He definitely deals with depression and anxiety; he does take medication that helps with that. His sleep is wonky if he doesn't use melatonin at night.

I don't know if this was helpful to anyone but me, but I enjoyed the exercise regardless. I do recognize that he still has plenty of challenges he fights through, but he has come so far! My favorites about him: he's kind and gentle, he is loyal, he doesn't care what people think (and he enjoys being right), he loves his dog (wish I had gotten a big dog when he was younger!), he believes in God and believes that He made him in His image, so He must have done so with a purpose. He's a good guy. Quirky as hell, but we're a family full of nerds, so it's all good with us!

Symptoms of autism in adults may be subtle or they may be obvious. If you have questions about yourself or a loved one, it's never too late to seek a diagnosis. 

After my son was diagnosed, we had an “ah-ha” moment thinking about my brother and his background history of social difficulties. When he (my brother) got an official diagnosis as an adult, he said it lifted a weight off his shoulders. He no longer had to wonder why he didn't understand basic interactions that others seemed to get without effort. Having the diagnosis gave him direction to find new tools and his “place” in the world. 

autistic boy

For more on this blog series:

Part 1: Quick intro before we get to the diagnosis

Part 2: Breaking down the diagnostic criteria Deficits in social communication and social interaction

Part 3: Breaking down the diagnostic criteria Restricted, repetitive patterns of behavior, interests, or activities

Part 4 (this blog): Breaking down the diagnostic criteria All the rest

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