The Perils of Un-diagnosing and "Curing" Autism

I'm fairly certain that if I was a child today, someone trained would have diagnosed me early on. I did not acknowledge my mother when she called my name and cried every time she combed my hair and attempted to put my socks on because both morning rituals caused excruciating pain. I spent hours sifting water and sand through my hands or obsessively painting black spots. I would have been seen standing next to Harrison Elementary School waiting desperately for recess to be over so we could get back to class while the other kids played chase or house together. I could correctly identify doric columns and flying buttresses as well as ethnic clothing from any known part of the world. I could also tell the difference between Crow, Blackfoot and Arapaho beadwork at an age when other kids were identifying Wile E Coyote or Fred Flintstone from Saturday morning cartoons.

And spinning. I loved to spin. Even at thirteen I spent a significant amount of time spinning. I got on well with adults and younger children but was terrified by my peers when I wasn't completely annoyed at them for breaking the rules or testing the limits. I was quick to correct them and spoiled more than one childhood reverie for my classmates including Santa Clause. I did not make eye contact, did not know how to ask questions or request help and the other girls referred to the language I did have as "stuck up". Experts would call it formal, idiosyncratic, pedantic.

I could go on but you get the point. As a child- I stood out. As an adult, I've been called intense and slightly eccentric by some, but most people don't really notice anything too unusual about me and no one would look at me and say "that lady is autistic."

Is it because I've been "cured" or somehow grew out of my autistic tendencies? The answer to that is a loud and unequivocal "NO". I have learned from my experiences, people's responses and through sheer hard work how to "fit in and fake it" when the occasion calls. It helps too that one of my special interests (autism) is also my career. I can obsess about my favorite subject in a way that society finds acceptable.

While I've learned neurotypical customs and language so that I can "pass" pretty darn well this does not mean my mind is wired to function like a neurotypical and that really is the problem when people talk about autism "cures" or undiagnosing someone. It assumes that the person suddenly can function in a neurotypical environment with the same ease as a neurotypical person when the truth is that fitting in can take herculean efforts.

This kind of oversimplified "cure" thinking is based on the assumption that autism is a static "thing" and that this "thing" is the cause for all the "symptoms" or problems in an autistic person's life. The idea is that if we could only get rid of autism the way one eradicates a bacteria then the person would suddenly be healthy and whole.

But autism is not an isolated or static "thing". It's a distinctive hardwiring of the brain that infuses every aspect of a person's life at a fundamental level. In my experience as an autism evaluator and "expert" this hardwiring has a strong genetic component as these characteristics are so often also evident in the parents, siblings and extended family who ironically advocate for a cure in the first place.

These distinctive autistic characteristics that permeate the family genetics do NOT go away in the individuals who have supposedly been "cured".

This is because when people speak of a "cure" what they are unknowingly referring to is the fact that a secondary condition such as a gluten or casein intolerance or a vitamin or mineral deficiency has been successfully treated so the individual is better able to function to their fullest autistic potential.

Treating a secondary diagnosis can make a huge qualitative difference in a person's life. It can for example be the difference between being able to verbalize or not. It can be the difference between having seizures or not. It can be the difference between sleeping through the night or not. It can be the difference between having excruciating abdominal pain or not.

I'm all for allowing people to feel better and reach their full potential and I think we need to routinely screen for those conditions that autistic people are predisposed to. But I think it's very dangerous to say a person who has learned to fit in or has been successfully treated for a secondary diagnosis has been cured of autism because it assumes the person no longer needs guidance, support, education or accommodations in areas where there may be real struggles throughout life.

Sometimes people also claim that autistic people are "cured" after going through "compliance training" (getting a person to copy or imitate socially expected behaviors) or because they have simply matured and learned new skills or strategies that allow them to better adapt the way I have learned to fit in. Autistic people who learn how to copy neurotypical customs, language and behaviors are no more "cured" than the American who learns the French customs, language and behaviors so that they can function effectively in a different culture. The correct explanation for this is "adaptation". And it's a heck of a lotta work in either case.

It is important to recognize that individuals on the spectrum encounter different challenges throughout life and are also as a general rule- better able at specific stages to fit in, feel good and function. For example, a large majority of the females I work with report feeling much less anxiety, decreased sensory issues and greater competence at faking it in their 20s. Both middle ages men and women report more extreme symptoms during their 40's and 50's. Men and their spouses often report that males develop more intense levels of anger at this time and women going through perimenopause and menopause report symptoms that are disconcerting enough to be referred to as "scary." Seizures, foggy brain and increased hypersensitivity reminiscent of early childhood sensory problems to name a few.

Are we really doing someone a favor by undiagnosing them at a particular stage in life because we no longer see visible signs of autism? Absolutely not. Doing so assumes that autism is static and that the individual will not experience times in their lives where autism related challenges may require additional support.

Doing so also assumes that just because you can't see the struggle that it isn't there.

Let's look at a common example of how this becomes a problem. Twelve year old David gets mad at another student and makes a bomb threat. Chances are David will be suspended and told "that's bad". But if no one recognizes this as echoic behavior and that it's the only way David knows how to express his frustration they probably won't teach an acceptable alternative to making threats such as saying "when ____happened, it made me mad because ____".

I can't count the number of kids on the spectrum I've worked with who were punished at school for 'socially inappropriate behaviors' because the adults assume they are just being "bad" or defiant. Their social communication challenges though real were too subtle to be recognized by most people. What would really benefit these kids is functional communication alternatives to get their needs met and an understanding of how their brains are uniquely wired so then can learn how to work with what they have.

When we "cure" or un-diagnose a child on the spectrum, we leave them vulnerable to punishment without the necessary support and guidance to learn important adaptive skills such as conflict resolution, setting boundaries, identifying emotions, prioritizing and initiation because the adults assume they are already equipped with the tools to function effectively. So they must just be "bad".

These children often develop a sense of shame as they get older for not measuring up to standards everyone else seems to meet with ease. They feel as if they are fundamentally flawed.

The solution to the problem is easy. Screen for and treat those conditions that we know can interfere with a person's quality of life such as seizures or intolerance to gluten, casein and carbs. But don't call it an autism cure and by all means don't un-diagnose someone who may very well need support at a later stage of life.