I am a doctor who treats autism and a mom of two kids on the spectrum and I am on the spectrum myself. I love all my fellow autistics and all my fellow autism mamas and papas, but I cannot go on acting as though the neurodiversity movement is just another wonderful diverse color in the autism rainbow. It is dangerous. I am going to tell you why.
For those not aware, the neurodiversity movement within autism is of the belief that autism should be viewed as just another way of being and not a disease. It is akin to being gay, for instance. The diversity should be accepted and celebrated. Part of this view, then, says you shouldn't be looking for a cure for autism any more than you should be looking for a cure for gayness. If only society would accept us as we are, things would be well. They accept the use of things like speech and occupational therapy but reject biomedical treatment and ABA (applied behavioral analysis), a specific kind of therapy for autism which targets behaviors and uses negative consequence at times to discourage those behaviors, regardless of the source of them.
In contrast, the biomedical view of autism recognizes that autism is a result of immune dysregulation, genetic mutations, chronic infections, allergies, vitamin and fatty acid deficiencies, autonomic nervous system dysregulation, GI system damage, methylation defects etc. These root causes can be treated to reduce symptoms of both core symptoms of autism as well as the many accompanying symptoms that impact quality of life (e.g. abdominal pain, sinus infections, allergies, insomnia). Beyond treatment, there is a call to discover all the factors triggering the escalating autism rates and to do something about it to prevent it. These environmental factors range from chemicals to pollution to infections to modern Western diet to vaccines.
I first became aware of the autism community when I was 22. I had been searching for an explanation for problems I had for several years and had ended up being diagnosed with Asperger's Syndrome, a form of very high functioning autism. I was diagnosed first by a clinical psychologist and then by a psychiatrist. I was living in New York City at the time attending graduate school at NYU. NYU's office of students with disabilities didn't find the psychologist's diagnosis good enough and sent me to a psychiatrist who was an Asperger's specialist. World renowned as I recall. He did an assessment and diagnosed me with Asperger's as well. I called him after the appointment and asked him what I could do about it. He called me back and left me a voicemail telling me there was nothing to do for treatment but he could give me the name of some local support groups for adults with Asperger's if I wanted him to. And that was that. The office for students with disabilities wasn't familiar with the diagnosis and asked me to educate them on it. I told them what I knew and they said there were really no accommodations they could think of. And that was that.
I did seek out some online groups for adults with Asperger's to see if anyone else knew anything more about helping the symptoms. (Literally *anything* would have been anything more at this point). I didn't realize I was walking into the world of neurodiversity. I found no answers for treatment. Instead I found a community of "Aspies" who were rather hostile towards the world of "NTs" (neurotypicals. i.e. those of you without autism). I remember one discussion in particular where they were discussing their need to marry another Aspie to decrease the odds of having an NT child. They postulated they wouldn't even want the child if it was NT. I myself was about to get engaged to an NT and was really hoping for some NT babies. Asperger's was hard. I exited from the adults with autism community.
It wasn't too long before I was married and pregnant. By this time I'd found out that I had several cousins on the spectrum as well. My understanding of autism was that it was a strictly genetic disorder (still the mainstream view, outdated as it is). I therefore assumed my baby would likely be on the spectrum and decided to join a local group for parents of children with autism. It was here I first found the biomedical community. I found out autism wasn't a purely genetic disorder, that there were rising rates and the reason was environmental factors. I found out about DAN! (Defeat Autism Now) and biomedical treatments. I began reading up on things I could do to minimize the odds of my baby developing autism.
I have been a part of the biomedical community ever since, first as a mama and now as a doctor too. I have come up with theories of what triggered my and my two sons' autism (I couldn't prevent their autism but I know they would be more affected if I hadn't intervened). Neither my sons nor I have regressive autism nor have we been vaccine injured. I have spent time with so many autism parents, though, who have shared their stories of typically developing children who very suddenly regressed (often after vaccines). And I have read the research.
I treat children (and adults) with autism and related disorders biomedically. I am also an advocate for autism education and acceptance. My own son experienced severe bullying due to his multiple disabilities and I have spoken at schools on the topic of autism to help reduce bullying. And to show them they shouldn't just accept or tolerate my son but see that he brings something to their world they're better off for having. This is the view of biomedical autism parents as well, despite how the neurodiversity movement frames things. The difference between the two views is what we attribute all that is wonderful about them to.
I am of the view that my son is amazing, his disease is not. This view is consistent with the scientific evidence. Research from academic centers such as Stanford, Harvard, and Columbia University are showing us that autism is related to factors such as immune system dysregulation, alterations to the gut microbiome and methylation defects. These factors are caused by an increase in toxins, our restricted and unhealthy modern Western diet, the overuse of antibiotics and c-sections by doctors, and our movement away from farms into hyper-hygenic living environments. The result? A compromised gastrointestinal mucosa and blood brain barrier, vitamin deficiencies, a build up of heavy metals and other toxins in the brain and throughout the body, autoimmunity and immune system deficiency. All of it ultimately leading to brain inflammation and damage to the structure, function and connectivity of the brain.
Brain inflammation is not diversity, is not who my sons are (or who I am). To say it is, is no different than to say someone's rheumatoid arthritis is who they are and ought to be viewed simply as diversity and not something to seek a cure for. As scientist James Lyons-Weiler puts it, "It is easy to accept and love autistics. We do not have to accept and love neurotoxicity."
My sons are sweet and kind and considerate and funny and fun and caring and honest and persistent and hardworking and passionate about their interests. They would be the same way without their autism. Their perseveration on their "area of focal interest" is too much. It's a sign of their inflamed brains. It's an obsession and a coping mechanism. Without autism, I am sure they would be of the personality type that gets very excited about topics they're into , but it wouldn't be pathological. And it is. It is pathological. It keeps them from connecting with people, it preoccupies them from other things they need to be thinking about and doing, it's a way they cope with their anxiety, especially their social anxiety.
Anxiety, irritability, aggression, mood swings, emotional meltdowns, sensory overload, restricted diet, low muscle tone, sinus infections, allergies, food intolerances, abdominal pain, diarrhea, constipation, insomnia, autonomic dysregulation (not being able to control things like body temperature and blood pressure well), a weakened immune system, phobias, communication impairment, clumsiness, headaches, trouble controlling voice volume, fine motor control issues, balance issues, difficulty with daily living skills, problems being overly rough with people, problems with personal space.... This is not diversity. It is a sick body in need of healing. No amount of acceptance and celebration will help these medical problems.
Perhaps there are those in the neurodiversity movement who are okay with the above (difficult to believe if you've ever experienced severe abdominal pain or an emotional meltdown, but possible I suppose), but are they okay with Parkinson's and cancer? Those of us on the spectrum are more likely to develop both as we age. Is this embracable diversity too? Are we not to seek a way to reduce our odds of developing these illnesses? More importantly, are we not to seek a way to reduce our children's odds of developing these illnesses?
That is what it comes down to: adults in an ill guided movement that undermines the ability of children to get the medical help they need.
Those of us on the spectrum must seek out healing for the wounds of our past (and present) and the anger and shame it has caused us. We must strive to grasp the idea that we can accept ourselves without accepting our medical condition. We must let go of the prejudiced, ableist notion that people living with a chronic illness are defective or unacceptable.
We are chronically ill adults deserving of accommodations and acceptance and love and celebration as much as anyone else living with a chronic illness. We must come to believe that, really believe it. Down in our bones. It is not too late for us to seek medical treatment for our illness to improve our quality of life and hopefully decrease our risk for other neurodegenerative issues down the road.
More importantly, we have the same obligation every adult has: to protect and champion children. They cannot protect and fight for themselves, it is up to us. All of us. Whether we have children of our own or not. And if the autistic adults of the neurodiversity community really do love their fellow autistics as they say they do, they should feel a special obligation to autistic children in particular. We need to do the right thing, no matter how hard it is.