A Letter to Our Students

email-clipart-7caRyadcA

John Elder Robison writes to the students enrolled in INTRA 490: Neurodiversity about neurodiversity, disability, and his hat.

February 17, 2016

First of all, I compliment you on the quality of thought you put into the reaction papers. I’d like to address some of your questions and comments.

I am glad to read that your concept of the autism spectrum has been broadened. It is indeed very wide. Some ask if it extends all the way from typicality to total disability, and I’d like to take a stab at answering that.

According to ICD-10, autism is broadly characterized as qualitative abnormalities in reciprocal social interactions and in patterns of communication, and by a restricted, stereotyped, repetitive repertoire of interests and activities.

Question for you: Why might I cite ICD-10 instead of DSM5? What’s the difference?

Under either definition, an autistic person has significant challenges with social interactions – usually communication based. Here’s one key to why some many more people are diagnosed autistic today:

In 1970, “communication challenges” meant you could not talk, or understand language. By 2010, “communication challenges” included the inability to read subtleties of body language in an otherwise articulate person. That difference is essentially why we have autistic W&M students today, and we had none in 1970.

In addition, the autistic person also has restricted or focused interests, and tends to have ritualized or repetitive behaviors. Examples might be compulsive hand washing, or stimming. Those are often seen as signs of disability. But a focused interest might also be a fixation on solving math problems, which obviously could have real career potential.

Obviously we could say lots of people have some of those traits. But most don’t have ALL the traits, and even if they do, most do not have the traits to such an extent that they present problems in everyday functioning. That is the key for diagnosis – you have to manifest multiple autistic traits to an extent that it’s a problem for you. If you have some traits, but they do not rise to that level of impairment, you are said to be part of the Broader Autism Phenotype.

If autistic people make up 1.5-2% of the population, BAP people make up another 5-8%. That adds up to quite a number of people, doesn’t it? Often, BAP people have family members who are more impaired and are diagnosed at different points on the spectrum. So in a sense the BAP shades invisibly into typicality but you need to have significant impairment to receive a formal diagnosis.

At the other end we have people who present a combination of autism and cognitive limitation or impairment. And some of you asked, is that the same condition? Yes, it is. We could take many groups of people – Mexicans, Middle Class Americans, or even Denver Broncos Fans, and within that group we would have people at all points on the IQ scale. You don’t usually give that any thought but it’s true. Just as it’s true for Autistic people.

Some autistic people are really smart. Most are in the middle. Some have very low IQ. Here’s another point: Autistic people often have higher logical intelligence than emotional intelligence. As a practical matter, that can cause an autistic person with an IQ of 100 to act like a non-autistic person with an IQ of 85 in a social setting. Yet you might give that person a puzzle to solve and he’d be quicker than a non autistic with an IQ of 115.

That’s a gift in the higher end of the IQ range, but autism combined with low IQ or cognitive disability is very, very disabling. But that does not make it fundamentally different. There are intellectually disabled people with autistic communication challenges and there are bright people with autistic communication challenges. They may differ in many ways, and their communication challenges may be very different but if the primary issue is communication challenge as opposed to general cognitive function, that’s autism. In a group of non-autistic people, would we say the ones with the lowest IQ are somehow fundamentally different?

It’s the same here.

We can take a group of people that are pre-selected for high IQ – say, W&M or Harvard students. Even within that group, there are bright autistic students with intellectually disabled siblings, some of whom are also on the autism spectrum. And there are non-autistic W&M students with intellectually disabled siblings. So all the combinations are all over the population.

I agree with those of you who observed that people with cognitive impairments have a wholly different set of challenges than most of you. That’s a really important insight and one to keep in mind when you talk to other autistics or their families – their lives may be very different from what you’ve known via your own exposure here or elsewhere. They may seek treatments you would not want or need.

So should it be celebrated? Obviously very few people are going to celebrate a disability that prevents a person from talking. But we can celebrate the achievements of autistics at many levels, and some of those achievers don’t talk much or at all.   Google Stephen Wiltshire for an example.

There are people who say things like, “I celebrate humanity in all its diversity,” and when a person says that they should be including autistic and neurotypical people, gay and straight people, black and white people, Christian or Muslim, etc. Neurological diversity is one of many diversities and there are severely disabled members of all those other groups, just as there are gifted members.

Several of you asked where the bounds of neurodiversity are. I think the answer is, they are where you think they should be. If you think you are different, and you find comfort among the student neurodiversity group, you should become a proud member of the tribe. There should not be a “qualification test.” If you read a book about autism and say, that feels like me, and you change your life for the better as a result, that is enough. You too can feel part of the tribe. And you may know or love someone and feel part of the tribe by proxy. It should be a pretty open thing, in my opinion. But that’s just my opinion. You students will make of it what you will. The course of the W&M neurodiversity student group is to a large extent yours to chart.

You asked if the concept of neurodiversity has meaning to the mother of a severely impacted child. I think it does. The perspective of how an autistic person thinks should be of value to a non-autistic parent. Furthermore, many of the gifted autistic adults you will meet were pretty obviously disabled as children, and it’s hard to know where any kid will go.

What about kids with medical problems, like seizures? Obviously not all autistics have those issues and we may have nothing in common in that sense. What we can share is the sense of duty to our tribe. That is, those of us who become autistic self advocates can and should speak out in favor of developing treatments and therapies to help ALL autistics, not just “autistics like us.”   That may mean social skills coaching for you, effective treatment for seizures for her, and basic life skills training for your brother. And there will be a few autistics that will require lifelong support in a group home or assisted living. Always remember our duty to speak up for brothers and sisters who can’t.

Another of you asked me about the evolutionary purpose of autism. He asked how autism differs from alternate sexual orientation. Why do gay people exist when there is such a strong selection pressure against something that precludes having children?

I can only offer some partial answers for that, from the perspective of autism research. Studies have shown that autistic people are much more likely to make alternate choices of sexual orientation, or display greater flexibility with respect to orientation. The best theory at this moment is that autistics are less connected to the social fabric around them, and therefore choose opportunities or evaluate situations with different/more flexible criteria. And that leads to different choices than typical people make. In that situation an alternate sexuality might be a genetic side effect of a trait that was expressed in the person’s neurodiversity, and that might be selected for its own reasons.  Look up the work of Isabelle Henault if you want to read more on that.

The same student challenged my assertion that inherited autism persists in the human genome because it’s beneficial. He said, Huntington’s also persists in the genome, and yet it kills people. . . . Maybe so, but we do not know what other effects the Huntington’s gene has. Maybe at confers immunity to a disease that was deadly to our forebears. The fact is, this stuff is too complex to know but the evidence is fairly consistent that evolution selects for the better shaping of species, and the fact that we don’t understand it all today does not make it any less likely.

I believe autistic people have benefited our species tremendously, and I doubt that is a new development. If some disabled people are the cost of that, evolution would not care. At least that’s what I believe.

The same person says whatever we believe about disability or genetics all people are still entitled to the same human rights and respect and that is a great observation!!

Another student remarked on my hat. The hat is an example of a behavior we can learn, and how it can help us out. I can’t read your body language. I am face blind, so I would not recognize you in the store. Social failures based on those disabilities of mine would embarrass both of us. So I do things to minimize the chance. I wear a hat that is pretty unique on campus. So you can say, “That’s Robison!”

The hat also marks me as well dressed, as opposed to looking like a ruffian. So if you met me outside of class, and I asked your directions, and looked at you strangely, you would be more likely to think I was OK, than think I was a weirdo. When I lack social skill, being better dressed helps me fit in.  The hat is a Borsalino fedora. Google that if you are curious. Borsalino hats have been worn by many social outcasts, musicians, freaks, and geeks. Even presidents and mobsters have worn them. I am in good company.

I’ll look forward to seeing you all in a couple weeks.

Best wishes

John Elder Robison