Back in the Day
Sometimes during the week an idea for my next blog reveals itself to me. I am a member of a couple of different Facebook groups made up of parents of children with high functioning autism. They were speaking a language that I did not understand. I found myself having to do a bit of research this week. I wanted to have a better understanding of what the parents in the group were saying.
Let me start by giving you the definition of autism per Wikipedia. “Autism is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behavior. Parents often notice signs the first three years of their child’s life. These signs often develop gradually, though some children with autism experience worsening in their communication and social skills after reaching developmental milestones at a normal pace.”
Back in the day, when I was initially trying to get to the bottom of Travis’s diagnosis, Autism Spectrum Disorder was the diagnostic label given to a broad category of neurodevelopmental disorders. The following types used to be diagnosed individually by differences and intensity of symptoms:
Autistic disorder
Asperger’s Syndrome
Pervasive Developmental Disorder not otherwise specified (PDD-NOS)
Childhood Disintegrative Disorder
The types had similar behavioral characteristics, but at different severity levels. Travis was diagnosed at age eleven with PDD-NOS. I believed that he was much closer to the Asperger’s syndrome diagnosis. Travis checked every box on the symptom list except that he made eye contact and he had a learning disability. Typically the Asperger’s diagnosis is given to individuals on the spectrum with normal to above average intelligence.
Asperger’s is considered high functioning autism. PDD-NOS fell in the mild to middle part of the spectrum.
In 2013, the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) revised these classifications. All types of autism are now merged into a single diagnosis of Autism Spectrum Disorder (ASD). Per www.verywellhealth.com, the creators of the DSM - 5th edition developed three levels of support.”
Level 1 - needs relatively little support
Level 2 - needs substantial support
Level 3 - needs very substantial/great deal of support
The older terminology is no longer used for the following reasons:
The spectrum illustrates a broad range of developmental delays and symptom severity.
ASD includes individuals who have a few mild autistic traits to those who need help with day-to-day functioning. It represents every intelligence level, as well as varying degrees of communication and social abilities.
The differences between one type and another type can be subtle and difficult to determine. Strict categorization may be less important than accessing needed services.
A diagnosis on the spectrum means you can turn your attention to assessing individual needs.
Some people on the spectrum will need a minimum of support services. Others will require much more. I am not sure how I feel about the level system. There is an ongoing debate among the parents in one of the Facebook groups that I belong to. Some of the members are parents of children with ASD, but also have ASD themselves. They do not like to be put in a certain level. They believe most individuals will fall in between categories.
On the one hand, I am unsure which level Travis would be placed in. I feel like he is maybe a level 1.5. I believe he does fall in between categories. I’ve seen level 1 described as being able to live on their own with minimal support. Travis needs significant support living on his own. I am guessing he would be closer to a level 2.
But then www.verywellhealth.com states, “An example of ASD level 2 is a person who speaks in simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication”. This doesn’t accurately describe Travis.
While the levels are defined by the amount of “support” an individual requires to function in the general community, the level could be different on different symptoms, and even day by day. Or situation by situation. It seems to me like it is open to a bit of subjectivity. Some doctors may make assumptions based on how an individual “appears” to them in the doctor’s office on that given day. That exact thing happened in Travis’s case.
As the above mentioned website states, “What type of support at what level? An aide? A personal care assistant? A 1:1 school aide? A job coach? A college advisor?” And in which situations? Home? School? Social settings? Work settings?
An individual may need different levels of support in different environments, and even moment to moment. Suffice it to say, the level system can be a bit confusing.
The DSM is the official publication of the American Psychiatric Association that defines psychiatric and developmental disorders. Diagnostic criteria has an enormous impact on the way insurers, schools, and other service providers think about and treat autism. So it is important to get the diagnosis right.
On the other hand, I don’t have a strong opinion about exactly what we call the diagnosis. As long as I can get Travis the support that he needs.
One parent in the group was upset when someone asked if her child was high or low functioning autistic. The parent had just shared that her child had autism. Some in the group have very specific ways that they would like their or their child’s diagnosis to be addressed. I am sure that I get it wrong more often than not. I have a child with ASD and I am not perfectly versed on the appropriate lingo. Terms like “high functioning” can be useful in understanding a general range within the spectrum. In my case, I would be happy for the interest in my child and for the opportunity to share a bit of his story. Maybe if people had a better understanding they would become more compassionate.
The autism spectrum is very wide and varied. Some people with autism are brilliant while others are intellectually disabled. Some have severe communication problems while others are authors and public speakers.
Some parents in the group do not want to share their child’s diagnosis at all. Because it does not define their child. And while I agree that having ASD does not define Travis, it has been helpful on many occasions to share that he has autism.
One such occasion was at the bowling alley. Travis and a few of his tribe members had taken it upon themselves to get signed up for a men’s bowling league. They were not great bowlers. They joined to have fun. Every other team in the league took bowling very seriously and were quite competitive. Travis’s team still won some games because of their hefty bowling handicap.
One night I went to watch Travis bowl. I sat at the table behind the lanes, enjoying a cocktail. It became clear that the guys on the other team were losing patience. One of them asked me a question about a change in Travis’s team line-up. As I answered him, I found a way to nonchalantly mention that Travis was on the autism spectrum. I watched an immediate change happen in the guy’s demeanor as the lightbulb went on for him.
Immediate. This guy went from being outwardly agitated, to calm and patient. What the guys on the competing team didn’t know was that no amount of showing agitation with their body language was going to get through to Travis’s team. Because they cannot read body language. Suddenly, the one guy that I shared Travis’s diagnosis with started giving Travis pointers on how to better his game.
If Travis minded me sharing his diagnosis I wouldn’t do it. I’ve heard him share with others that he has ASD. Travis knows that I write a blog about him and our family’s journey. Sometimes he asks what the next blog will be about.
At the end of the day, I can respect how other ASD individuals or parents of children with ASD handle situations and diagnosis sharing in their lives. All I ask is that they do the same for others with a different perspective. If someone doesn’t use the appropriate term, consider their intent.
While reading the posts on one of the groups that I follow, a man with autism posted that he had a hard time making friends and wondered if anyone would like to add him. One woman responded that she could not add anyone who supports Autism Speaks. First let me just say, why not just scroll on by? The woman has ASD and an issue with Autism Speaks. I plan to do some research, that may end up being in an upcoming blog. Since the autism spectrum is long and wide, he may be at a level that he may not understand what her issue is with Autism Speaks. She looked at his page and determined that he supports it. Right now, I do to. I will let you know if I change my mind.
I found her response judgmental. I didn’t expect to find judgement in this group. Then I stopped and remembered. She is on the spectrum. She may have difficulty with perspective taking. My boy being on the spectrum doesn’t make him understand others better. He is still rude and judgmental. He would definitely give his opinion on a matter, like it or not.
So I just scrolled on by!
“Once you have met one person with autism, you have met one person with autism.” - Author Unknown
“(So-called) Mild autism doesn’t mean one experiences autism mildly… It means YOU experience their autism mildly. You may not know how hard they’ve had to work to get to the level they are.” - Adam Walton