Looking forward at the autism spectrum
Where is this autism spectrum of ours headed?
It’s the time for New Year resolution, and mine is that we autistic individuals rethink how we present autism to the public.
By now you’ve likely read that the latest version of the DSM guide proposes to merge Asperger’s, PDD-NOS, and all other autistic conditions into one diagnostic category, to be called Autism Spectrum Disorder.
A number of parents and advocates for people with very severe autistic impairment have criticized that move, saying it will render people with both severe autism and intellectual disability almost invisible.
Some even feel the traditional autism diagnosis has been “taken away from them,” to be replaced by a broader, more Asperger-like diagnosis.
I agree with those sentiments.
Thirty years ago, the largest percentage of kids diagnosed with autism also had some degree of intellectual disability and were by any standard, near 100% disabled. Today, the majority of kids diagnosed with autism do not have intellectual disability and most will grow up to live and work independently. That’s not because the number of kids with intellectual disability has dropped; it’s because the autism diagnosis is applied to a much broader swath of population.
To understand how this has happened one need only look at how the phrases used in the definition are interpreted. For example, “Substantial communication impairment,” was at one time a euphemism for, “unable to have a conversation.” Today it can mean that, or it can mean, “has difficulty reading body language and interpreting unspoken messages.” The range of meaning of those three simple words has expanded tremendously.
To a lay person, an autistic person who cannot hold a normal conversation presents totally differently from one who is highly articulate, but misses subtle social cues and facial expressions.
Yet that is the reality of the autism spectrum as we know it today. We have a large and growing population of very different individuals, under one very broad diagnostic umbrella.
As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves. By doing so, they are altering the public’s perception of what or who an autistic person is or may become.
This reshaping of perception has moved the public’s concept of autism higher on the IQ range, with more and more people seeing “autism” as a euphemism for “eccentric geek,” or, “genius,” which is most assuredly is not. Popular television shows like Parenthood and Big Bang Theory reinforce that trend.
At the same time, the population of people with intellectual disability and severe autistic impairment remains fairly constant. Those individuals are often unable to speak effectively for themselves though there are some striking exceptions and the appearance of new communication tools is rewiring that story at this minute. They are most often out of the public eye, and they may rightly feel they are rendered nearly invisible by this change in perception.
What might we do about this?
For starters, all of us who occupy the more verbal and articulate end of the autism spectrum can keep in mind that it is a spectrum, and some of our fellow spectrumites are much more verbally challenged than we.
Every time a person with milder autism speaks of his own challenges, those words add to the body of information the public uses to define autism. The more we move that balance from disability toward eccentricity, the more we harm our cause, albeit unwittingly and with the best of intentions.
When self-advocates’ autism talk shifts primarily to rights and entitlement, the need for new therapies, treatments, and services is forgotten. When we focus on entitlement, we create the impression that our problems can be solved by legislative action, much like the civil rights laws did in the sixties.
Entitlement and equality are great ideals, but they do not remediate disability. We must not lose sight of that fact, when building autism awareness. We are not equal people fighting for equal treatment. We are disadvantaged people fighting for remediation of our disability, and the opportunity to be treated fairly by society. That is a very different proposition.
Autistic brain differences may indeed be a component of creative genius, but they are more often a contributor to significant disability. We need to balance our own desire to “think positive about our potential” with the need to keep the public more in touch with current reality and the services we so desperately need.
The autism spectrum still includes a large population – several hundred thousand in the US alone – who currently have limited opportunity for employment. That is a tragedy. And it’s not because they are discriminated against. It’s because they are disabled, and there are no workplaces with accommodations nearby.
I suggest that is the thing we need to fight for the most, as we build autism awareness. We need help remediating the many, varied, and often profound disabilities that touch those of us with autism. Only then can many of us fully integrate with society in the way we all desire.
For this New Year, I wish for all of us to keep our more challenged brothers and sisters in mind whenever we discuss autism with the public. It’s great to be upbeat, but for many, autism remains a crippling disability. The fact that some of us emerge from disability as an adult does not make the challenges faced by others who do not any less real or meaningful.
If we are to be a truly great society, we must aspire to a great quality of life for all, and that means those of us who cannot speak for themselves must not be forgotten in that quest.
In my opinion and based on my research, the latter half of this statement is unfortunately not true. "Most" will not live and work "independently." They will require supports and funding that currently are woefully absent or deficient.
It will take innovators in housing, employment and social-recreational settings, and new ways of thinking about how to pay for it, to come close to achieving independent living for autism's majority -- the kids, teens and adults who live between HFA/Aspergers and those realizing the benefits of ABA and other treatments and the insurance mandates that pay for them.
My company - LTO Ventures (www.ltoventures.org) - is just one of this emerging wave of innovators.
As an only parent of a 16yo daughter who is nonverbal and moderately-to-severely affected, thank you for standing up for her and encouraging other higher functioning persons and self-advocates to do so as well.
Felicia (recall from IMFAR...)
Contrary to your implied assertion that people who can advocate must be "high-functioning," there are a very good number of Autistic people who self-advocate who have been labeled things like low-functioning or retarded, been excluded from mainstream schools, been institutionalized, and or are non-speaking. Many of these people have aides now as adults, and as they advocate for themselves and other people. Nearly all Autistic people who self-advocate, no matter how well they can pass for normal or not at all, always have in mind the needs of ALL Autistic people, not just a few needs that affect some people.
Promoting the idea of an autism rights movement or civil rights or human rights for Autistic people does NOT mean that those who support such things are opposed to Autistic people seeking or receiving appropriate support, services, or help. Just like non-Autistic people, some (probably many if not all) Autistic people can truly benefit from having a supportive network or appropriate services. Some Autistic people might need more services or supports to be able to live happily, while others might not need as many if any at all. Supporting autism rights is not mutually exclusive with supporting access to appropriate therapies or services.
I feel that your piece, while certainly well-intentioned, is written with several fallacious assumptions guiding it or as its backbone, and that's what is disappointing.
He does not miss the point of self advocacy. He acknowledges some on the spectrum simply cannot do it effectively because they are THAT disabled. Yes, it's a spectrum. Yes, it is famous (or perhaps notorious?) for its presentation of uneven skills in an individual. Yes, some non-verbal, by most accounts severely autistic individuals, can blog. Yes, even those who cannot blog can sometimes self advocate to some extent, by protesting, or using more simple means of communication other than language. So what? You and I can both go on the internet and argue our points fairly coherently if not downright eloquently, and understand what other people say in response. It's a big advantage, and it should not be taken for granted. A big chunk of individuals on the spectrum simply cannot do that. I don't see how acknowledging this is tantamount to stereotyping all self advocates as high functioning aspies who don't need any help.
I know that people are more severe than me and I too tire of the whole genius/ gifted stereotype applied to autism. But without the AS diagnosis I would have given up because I didn't know I had the potential to be smart. My whole life people treated me like I was stupid and I never knew much general knowledge. My interests were too limited and were hardly about the sciences, or history or anything that would make people think, 'wow, you're smart.'
You know it's funny, people with AS (some of them) feel with the DSM merge they are losing their identity and think they will be clumped with people with more severe disabilities, or they might be forgotten about all together because they no longer fit the criteria. So, on both ends of the spectrum people are complaining.
What the DSM V is really about is limiting the number of people getting diagnosed with autism. There are three types and each one addresses severe disabilities that require the most support to mild ones that require the least.
I'm 26 now, know just what is wrong with me and why it's harder for me to get a job. But now I do things I never thought I was able to do before. I'm writing a book and with my history of learning disorders that's pretty damn incredible. I'm living close to the city and live semi-independently. I've never had so many health issues in my life especially the drug damaged sensory issues and seizure disorder, and possibly hypoglycaemia. You've got to remember people that are high functioning can still regress too. It's happened about twice in less than a year for me. I know someone who even went non-verbal over it.
It's still hard for those of us who are high functioning especially when we hardly have people to help us, who are probably pushing us out the door because on the outside we don't seem to be disabled.
I question the claim that “At the same time, the population of people with intellectual disability and severe autistic impairment remains fairly constant”. Recently published data (see http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4428.0main+features82009) shows that while the number of Australians with autism/ASD more than doubled from 2003 to 2009, this was only partially due to "milder" cases: in 2003, 87% had severe or profound disability, then the percentage with severe or profound disability dropped to 74% in 2009. Note however, most people with autism/ASD in Australia in 2009 still had severe or profound disability.
The number of people with an ASD diagnosis is growing significantly … and a growing number of people with an ASD diagnosis have inspiring outcomes. We in the "autism community" are very keen to celebrate high functioning and successful people with an ASD diagnosis. Maybe we should review whether all those more successful people said to have ASD ever really met or still meet the required criteria for severe or profound impairment. We may be fooling ourselves a bit.
We should celebrate people who are successful and who “lost” an ASD diagnosis ... hold them up as role models and for inspiration. Let us also be very clear when people lose their "disorder" diagnosis (may be they still have a residual autism spectrum condition rather than "disorder"?), and that this should be achievable for others too.
We must keep John's closing remark in mind.
I've covered this topic a bit myself and I think last time I did it, I used dogs as an example.
When we say DOG, someone will automatically reach into their own experience and pick the most appropriate dog from their memory. It may be a big dog or a little one.
Lumping everything together under one category is just as useful as combining all those dog breeds to simply say "Dog".
BUT... it's only a label.
I agree that "we autistic individuals rethink how we present autism to the public.". We should probably be jumping up and saying "I'm one and so is he".
We need to be raising awareness of the diversity within the label while still encouraging people to accept the individual rather than the label itself.
In my essay, I point out that those who advocate effectively for themselves necessarily have good communication abilities, in some way. I then consider that the self-advocacy group is balanced by an autistic population who, for a variety of reasons, does not advocate for themselves.
Your statement that “Nearly all Autistic people who self-advocate, no matter how well they can pass for normal or not at all, always have in mind the needs of ALL Autistic people, not just a few needs that affect some people” is at odds with much of the discussion I have observed online and in person.
What I have observed is that much self advocacy is directed at getting the needs of that particular self-advocate met. Really, what else could we expect? People should speak up for what they need. My larger point is that the autism community has such a diversity of people, with often differing and sometimes opposite needs, that it’s hard for one person to self-advocate for both.
Finally, I am not at all opposed to the idea of an autism rights movement. I simply point out that framing the autism discussion as one of “rights” as opposed to “disability remediation” takes the focus away from what I see as the central issue, which is development of tools to remediate that disability.
At the same time, I do recognize that discrimination against us is real and present, and I would not argue that we should not fight that. In your response you point out that some autistic people might not need many supports or much help; for them, acceptance is the only goal. That’s great for those people but it does nothing for the profoundly disabled portion of the autistic population, and I simply suggest that we not overlook those people, and we keep those needs in balance
Thanks for your thoughts.
My challenge now is I need to restructure my life's vocational direction since Real Estate was my only real job. I could research at home do alot of phone work limited face time. Yes, I am disabled and my challenges are great but I didnt live this long to give up. In seeking for myself I am very sensitive to how my actions and voice can give a face to AS.
Your article speaks to me of keeping a balance and gentle understanding of our role in the community. It is crucial that how we conduct ourselves personally and what we do under the advocacy/help umbrella be well thought out. It isnt lost on me that the voice I have is a gift and so many are without one! Thank you for your always thougt provoking words!
So very well said. Thank you for sharing this in a forum that will draw much-needed public attention to this discussion. My 10 yr old falls far on the non-verbal side
of the spectrum.
brings in an important element in autism awareness. Thank you. You've said as much in our interviews but it's great to read too. ~ ANNE (Barbano)
Again; thanks for sharing.
I am all for equality, no more judging, tons more accepting and just being ourselves no matter who thinks what... however, to those who try to take away the "disorder" label or try to promote autism as a way of simply being "just different"... you are essentially giving the government, insurance and others a free pass at turning us away from the services and therapies and tools we all need.
Don't stop pushing for understanding and acceptance but remember that it can be taken too far. If you convince people that you don't need help, they'll stop giving it.
As a parent of a high funcitoning Autistic child I can honetly tell you the fight just to get him occupational therapy in my area is horrifying! The inclusion of his disabilities will open the door to those desperately needed services so he isn't impaired further by something he has no real control over. I do appreciate your article it opens the door to remind other's that what is said and done in public can impact the overall outcome.
As always your writings are articulate, inspirational and spot on. I agree that we need to keep balance and remember that a spectrum disorder is exactly that, autism embody's individuals who are less impaired and severely impaired and everything in between. We need to advocate for all of autism and those of us with intimate knowledge of autism need to also remember that when you have met one person with autism, you have met one person with autism, so vast is the spectrum. We have to avoid autism being boxed in by one any image, that of the kid who can't speak at all and is defined only by repetitive movements, that of the odd genius or that of the highly functioning barely there disability. It's about balance.
Thank you John.
It's not just the kind of blog-writing and movement-leading stuff that most people think of as the purview of "high(er)-functioning" individuals.
Here's a story: I'm 29 years old. You could fairly call me high-functioning, all the problems with the term aside. I speak fairly well. I write very well. I have employment, friends, and live on my own. And I went 9 years without seeing a dentist, because my experience with dentists had tended to be painful and humiliating.
Well, I had to go this year, because I was having sudden, mysterious and severe pain. So I found a clinic and went.
At intake, they asked me if I was a special-needs patient. So I explained briefly how Asperger's Syndrome affects me in terms of anxiety and extreme sensitivity, and that I had never gotten appropriate pain relief during dental/orthodontic work previously.
What happened next was totally amazing to me. My dental student was supremely respectful and cognizant all through x-rays and cleaning of how sensitive my gag reflex was, and how much pain I might be in. They gave me more anesthetic gel practically every time I flinched. My mind was totally blown--that I could say I was uncomfortable, and have a health care provider a.) believe me, and b.) do the appropriate thing about it. This had seriously probably never happened before.
So I'm totally unsympathetic to the "but they're not like you, they'll never be able to self-advocate!" Because I'm not talking about writing books or giving speeches or leading movements or founding ASAN--I'm talking about being able to be believed and taken seriously when someone communicates, in any way, "I'm in pain," or any other viewpoint on their own life or perception, and have it respected.
That is a reasonable goal for anyone with ANY degree of communicative ability.
And yes, I thought of all autistic people when this happened, not only of myself or the ones most like me.
My first look at autism was in middle school, when I tutored in the "severely disabled" special ed room. Brett was one of my favorites, and he was autistic. He was non-verbal, would never learn to read or write, basically "classic autism".
I never imagined that a child who could recognize every letter of the alphabet before age 2, count to 20 using objects in 3 languages by age 3, and who could speak with vocabulary words beyond her age level could also have autism. This is my child, and we learned only last year, when she was 13, that the reason she doesn't make eye contact, can't differentiate between a hand towel and bath towel, spends hours alone walking in circles while making strange, repetitive sounds is because she has autism.
It's perplexing to me how one word, autism, can be applied to people with such huge differences in functioning. From those like Brett who are severely disabled to those less disabled than my child and the many in between- it is so important to advocate for ALL of those on the spectrum.
- thx for sharing! julie