The current CDC report that autism is now diagnosed in 1:31 or 3% of children fell like a tree in the middle of a road paved by lunatics. Forgive me. Paved by crazies. Alright, paved by my relatives.
It isn’t autism. It’s bullshit, or so the story went. Overdiagnosis. Environmental toxins. Vaccines. Obesity.
You do know who you are talking to right? They didn’t, so I went there. I started with the DSM and then cruised back through history. There was a lot of dead air on that phone call.
Well, we’ll know the cause by September.
Will we?
Will we? (My therapist can picture me saying this with that tone.)
No.
This could not come at a worse time for the autism community as it continues to grapple with issues like:
Autism is a neurodevelopmental disability.
Autism is not disabling.
Social skills teaching is ableist.
There are no effective ways to help our children.
I’m not here to debate these topics today. I will address the research though. As someone who consumes journal articles on the topic, I have noticed an intentional shift towards person-first language and a hesitancy to embrace biological or genetic models by some vocal groups. The fear is real. If we can prevent autism, will they try to cure it?
Autism is not a disease. It is not an infection. You can’t catch it like the common cold. It is, however, a neurodevelopmental disability known as autism spectrum disorder which has a profound impact on many. The statistics are sobering. More than 70% of autistic individuals are unemployed. Up to 30% have an intellectual disability. 70% or more of autistic individuals have comorbid mental health disorders. Autism is not benign.
Should we learn how autism develops? Yes. It would be great if we could mitigate the more profound impact of autism if we can. It’s a sticky wicket for sure, but one I’m willing to dive into head first.
The research will not be available this Fall unless we’re talking about a poorly done meta analysis of cherry-picked studies. Research should be done into the origin and development of autism. It should.
Why?
- A better understanding of the development of comorbid physical and mental health conditions. This can include things like shared neural mechanisms in OCD and autism or immunological etiology of autism and Ehlers -Danlos Syndrome, for example. What could be the problem with not researching autism genetics and biology? For starters, there may be biological changes inherent to autism that make treatment with antidepressants or other medications more or less effective for autistic individuals. This is a hard question to answer, particularly due to how we conceptualize autism now. Several neurodevelopmental disorders which were once considered to be distinct disabilities are now folded into one continuum. The autism spectrum. Whether these conditions represent biologically distinct categories is really unclear, as are the implications for treatments with medications for comorbid conditions. This is a highly under researched area. With psychology, it can often be a know if if you see it diagnosis instead of counting on clearly distinct biological boundaries.
- Minimizing disability through effective strategies to aid in communication difficulties (for example). Why? To help people improve their relationships, decrease school and work-related stress, unemployment, and loneliness. Simply put, this could reduce suffering. THAT is the real sticky wicket though. Do we want to view the disabling parts of autism as suffering? That depends on who you ask. For many, this is considered insulting. For those who suffer, not so much. Again, I’m wading deep. I work with families every day for whom autism and related behaviors, social isolation, and peer rejection are not benign. If science can give them more tools in their toolbelt, I’m all for it. Interesting studies have come out showing some differences in neurotransmitters in the brains of autistic individuals that may give rise to medications to help with social communication. This might not be important for you, but it could have important implications for someone else, and don’t we all deserve to live our best lives?
- Alleviating caregiver stress. Ouch. Where do the sticky wickets stop? I know. But caregiving is stressful. In fact, caregivers of children with profound autism experience chronic sorrow, anxiety, depression, and stress. Caregivers are frequently mothers and up to 48% of caregivers admit to feeling anger toward their child and 12% even admit to experiencing significant negative social impacts in their own lives. 34% experience high levels of burden. That being said, 43% of caregivers do not feel that they have lost control of their lives. Of course, that means that up to 57% do feel that way.
- The cost to the individual, the family, and society. First, I want to say that we have a moral imperative to help our fellow man in every way that we can. Autism costs are currently at about 3.6 million/lifetime/person. I know that’s a lot. If costs continue in healthcare the way that they are, by 2029, we could be talking about lifetime costs for the United States of upwards of 12 trillion dollars. No, autism is not an epidemic. But people who are autistic often need healthcare services and services to help them live as independently as possible. It is really gross to boil it down to the numbers, and that is not my intention, but the numbers give me pause.
Let’s summarize:
Autism is currently diagnosed in 3% of children in the United States due to more inclusive criteria and better awareness and evaluation by trained professionals. Neural mechanisms are currently being researched, but may improve treatments for comorbid conditions as well as helping with things like social communication; perhaps lowering some of the social costs. There are social costs, and they are the sticky wicket no one wants to talk about.
We will not know the cause of autism by September. If one is postulated, be very skeptical of the science.
Also, research. We should still do it.