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 (CLICK HERE): Breaking down the diagnostic criteria -- Restricted, repetitive patterns of behavior, interests, or activities
Part 4 (Yea!): Breaking down the diagnostic criteria -- All the rest
Last week I talked the second part of the autism spectrum disorder diagnostic criteria "B. Restricted, repetitive patterns of behavior, interests, or activities." 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 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!
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.
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?
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.
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 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 Dude 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!
I'll continue this series as time goes on, sharing the fun antics we enjoy as a parent-adult son relationship which is a whole new game, now! New adventures!