Tuesday, July 8, 2014

#Autism - whose table is it? Who gets a seat?




When the autism awareness movement began, it was led by parents advocating for their children.  Parents founded most of the original advocacy organizations, and parents fought for services.  Many times they worked tirelessly on behalf of children  who were ill equipped to speak for themselves. 

Many things have changed in the past decade.  We now recognize a much broader spectrum.  Many of the kids who were the original focus of parental advocacy are now autistic adults.  Technology and emergent therapies are helping them and others at all points on the spectrum communicate effectively and broadly. 

Between growing up, being recognized in adulthood, and developing more ability to communicate effectively, members of our autism community have become far more able to speak for ourselves.  Given that reality, I believe it’s time for a shift of balance in some of the organizations and groups involved with autism.

Autistic advocates are already shifting the discussion from awareness to acceptance and support, but more is needed.  

Specifically, it’s time to recognize the primacy of autistic people in the formulation of policy relating to research, education, treatment, and services for our community and our people.   We are able to express our own wishes and opinions, and we are doing so more firmly every day.  We no longer need parents or professional to speak on our behalf as a community.  Some individuals will still want such assistance and that's fine for those individuals but – just as in other communities of adults – the majority of us can and should communicate for ourselves.

Speaking for ourselves is an essential step to independent adulthood.  It's not a dismissal of parents; it's the same thing every child does as part of growing up.  Some autistics do this at the "typical" time; others are a few years later.  Some don't become independent speakers until well into adulthood and a few never speak for themselves.

Wherever a particular person falls on the independent speaking spectrum, the previous paragraph does not imply parents and professionals don’t have valuable input to offer – they do.  Rather, it’s a recognition that a happy and free adult people must determine their own destinies whenever possible. with advice - not oversight - from others.

Parents, family members, guardians, and professionals have a place at the table, but let’s recognize that it’s the autistic people’s table, and parents, friends and helpers are the guests, counselors, and advisors, not the leaders.

Anyone who reads the news knows how the recognized prevalence of autism has risen steadily this past decade.  At this point, our numbers make us a significant subgroup of the population.  In America – for example - we outnumber both Jewish and Native Americans by a substantial amount.  It’s reasonable for us to expect the same recognition, rights, and acceptance as other population groups.

It’s also time to recognize that we are also more than a group of “people with a disease.”  The evidence shows we have always been here, and we always will.  That does not discount the idea that some autism stems from environmental toxins or other preventable causes.  Rather, it reflects the emergent realization that there are multiple autism(s) and one form seems to be a stable part of humanity; unrelated to disease or injury.  As much as we may seek to prevent neurological injuries and correct those that occur, we must also respect those of us who are simply “born different.”  And of course there is the issue of perspective – to me, it may be you that’s different!  We may each see that in each other and we both deserve respect and acceptance.

That means facing the fact we have our challenges, but we have our gifts too. The balance varies from person to person, and for each of us, it may change over our lifespan. Like any community all our facets should be recognized and respected.  We say autism is a way of being . . . who should young autistic people learn this from if not autistic adults?  That’s why it’s so important for us to build community and dialogue.

Most of us are aware of the breadth of our community with respect to how autism affects us, and what mix we may have of gift and disability traits.  There are differences in our expectations too, with some of us wanting to be left alone, some wanting acceptance, some wanting assistance and some calling for a cure.

The opposite ends of that spectrum are to some extent mutually exclusive on a population level but we can hopefully accept that range of difference individually.  It all comes down to this:  Whatever we believe, it’s our community, not our parents or our teachers or anyone else’s.  It’s up to the autistic adults to take charge and shape our destiny going forward.

I believe it’s our right, responsibility and indeed obligation to speak up for ourselves.  If we believe our community contains members who cannot speak for themselves we have a duty to do our best to speak fairly for them too. 

We have a broad range of wants and needs.  Who better to articulate those needs than those of us who are affected?  We express outrage when outsiders broadly characterize autistic people as “suffering from autism,” but the fact is, every human suffers from something sometime.  When we suffer, we should speak up.  But we should also speak up for our joys, our hopes, and our dreams, because speaking up is the first step in making those things real, just as it’s a first step in making suffering go away.

By saying this I am not presuming to speak for any specific individual, nor am I suggesting autistic adults should bull their way in to try and speak for individuals who are unable to speak for themselves.  Any community will contain members whose guardians speak on their behalf, but they are in the minority.  In the autism community, that shift will represent a reversal.

Autism – by definition - presents us with communication challenges but most of us can and do communicate by the time we reach adulthood.  It’s time for us to use that great human gift, for all our sakes.

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s Neurodiversity Scholar in Residence at the College of William & Mary.  The opinions expressed here are his own.


15 comments:

usethebrains godgiveyou said...

Technology and emergent therapies are helping more people at all points on the spectrum communicate effectively and broadly. Lawdy...ain't that the truth...http://emmashopebook.com/2014/07/07/saying-one-thing-meaning-another/ This girly amazes me! AND, she is getting as far as she has gotten with the help of able advocates! The mother ignores "experts" unless they really are!

Yet, I know that parents of kids with severe communication problems, kids whose channels have not been discovered, or whose behavior is life threatening, or whose medical problems are life threatening...feel totally unheard by advocates, bulled over.

What is the disconnect?

Parents go through stages of acceptance (we all did), so, where they are at it part of it. Some never lose the desperation and are easily manipulated by charlatans. But some totally accept their children, but still don't think their children's lives compare to kids living independently. I guess that is it. When the onus of always knowing your child's care will ~always~ be ~your~ responsibility...it's more difficult to listen to someone who is independent. It's like when John McCain said a person needed to have about 6 million dollars a year to get by...For him to have put himself in the same league as the rest of us showed a cluelessness.(Maybe that's a bad example...it just came to me.)

Advocates who make the world a better place for our children belong. But so do parents who must make decisions for their children that the advocates will never have to make for themselves.

Jodi Vetter said...

As a person on the autism spectrum (I have Aspergers and ADD), and as a parent of a child on the spectrum, I see both sides of the advocacy issue. On one hand, I would like the freedom to chose what therapies and services I receive on my own behalf. I should have the freedom to decline treatments, and I should not feel threatened when I decline therapies I don't need. I should not have to prove my condition (I am a woman, so often people mistake my "issues" with depression).

As a parent, I have seen too many times people with autism advocate for themselves, often cruelly. I have been accused outright of abuse for both utilizing Verbal Behavior ABA therapy (which is completely different than classic ABA), or for him not having immunizations-- my son is allergic to ingredients in the shots.

I think that we all should have seats at the table, but both parents AND autistics need to reserve judgment. There is no room at the table for name calling and accusations.

John Elder Robison said...

Jodi, you are right we must be respectful. I believe those o fus who choose to speak up publicly have a duty to do so in a respectful manner. I know it's a very emotion-charged thing for many people

usethebrains godgiveyou said...

Good for you, Jodi. I did something similar w/Ben...the language component part of what was ABA back 15 years ago. I never made him be table ready or stare at me, though. It was ALL about teaching him words visually.

simplegiftsgalleries said...

Excuse me, John. I'll shut up after this:

Verbal ABA ---I knew I had heard that before: https://www.youtube.com/channel/UCBRjXfiSVr1XzU5ZhAZkLMA
also http://www.altteaching.org/

Thousands of hours of ABA, Speech, OT,...said child just couldn't learn.

Verbal ABA is very interesting!

BarbIshy said...
This comment has been removed by the author.
BarbIshy said...

Hi, I really appreciate your articles and I do have concerns about the danger of over advocacy. I have a long background in community development and career guidance and have in recent years have worked in the field of autism and Aspergers in the UK. I am working on a course for 14- 16 year old, to teach employment related communication and social skills, as I have met many people who are not achieving their career goals or potential because they struggle in these areas. I really don't assume I have all the answers and it will be a learning journey for us all, but I feel passionately that I can contribute, despite my N.T status. However, I don't want to crash a scene where I am not needed or wanted. I am not trying to advocate, I am trying to provide some hopefully useful tools.

gurudasa / joseph galbraith said...

Outstanding blog post...THANK YOU for this! :)
Joseph Galbraith
ASD and ACC

Sharon Morris said...

John you say " the majority of us can and should communicate for ourselves."

Is this true? I'm not sure it is. But I am sure the loudest voices in the autism advocacy movement are at the Aspie end of the spectrum. I agree with the sentiments of this post but I also think we need to be careful not to silence the issues that come from the most severe end of the spectrum. Some are going to rely on their parents to advocate for them for their lifespan. Those voices need to be heard too.

AutiDiva said...

John, you are a true Leader, and I bless your commitment to our movement. I look forward to meeting you in the future to further our cause to bring Autistic Individuals into mainstream society, to take their rightful places, just like anybody else.

Adults like us are who the Autistic Children need, and should have as guides, mentors, teachers, employers, and Friends. Because of your successes in life already achieved, as well as many other successful Autistic Adults, the future is brighter, for All of Us!

Thank you John! We are indeed on our way to the Better :)

ce8d632a-647c-11e3-94d3-000bcdcb2996 said...

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Inventor of ADHD: “ADHD is a fictitious disease”
www.currentconcerns.ch/index.php?id=1608

Co-Founder of DSM admits there is no way to scientifically prove that mentall illness is real
www.cchrint.org/psychiatric-disorders/psychiatrists-on-lack-of-any-medical-or-scientific-tests/

One year old babies and younger being put on psychiatric drugs
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www.stopshrinks.org/reading_room/antipsych/psych_drugs_shorten_life.html

Psychiatry is based on lies and falsehoods
http://jonrappoport.wordpress.com/2013/05/07/the-lying-liars-who-lie-about-psychiatry/

Psychiatry is a fake science
http://jonrappoport.wordpress.com/2012/09/05/more-evidence-psychiatry-is-a-fake-science/

http://www.bibliotecapleyades.net/ciencia/ciencia_industrypsychiatry26.htm

Every human emotion is now a "mental illness"
http://www.bibliotecapleyades.net/ciencia/ciencia_industrypsychiatry27.htm

Ten Myths about Psychiatric Drugs
http://www.metzelf.info/information/myths.html

Studies show psychiatric drugs have no benefits and are dangerous
http://childhealthsafety.wordpress.com/2011/08/17/three-new-studies-show-%E2%80%9Cpsychiatric-drugs-provide-no-benefit-and-are-dangerous%E2%80%9D/

Psychiatry is now giving 3 year old children drugs
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Psychiatric drugs make you sicker
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A few free eBooks talking about how psychiatry is a massive hoax
http://www.psychiatric-help.org/PSYCHIATRIC-HELP/default.asp

A list of THOUSANDS of psychiatrists who have committed crimes against their patients
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Stephanie said...

John,

You make a valid point and I agree that adults with autism belong at the table. The idea here that troubles me is the "leader" portion.

Honestly, I think a big part of what's wrong with autism policy today is that we establish leaders and authorities in autism policy that practically dictate that policy according to their own, individual agendas. While making those "leaders" adults with autism would be an improvement in policy, it would not address the problem with the policy-making itself.

Personally, I'm someone on the border -- not diagnosably autistic, yet not "normal" either -- who married someone who was also on the border, and together we produced three little people (who are growing into big people) who are diagnosed with autism.

Should the table be a table about "autism" at all? Should the table be broadened, inclusive of neurological differences? Are the challenges of people with autism so different from both epilepsy and ADHD (both of which co-occur within people with autism) that the label and diagnostic differences are meaningful at a policy level?

We band together, we sit at the table, because we recognize that individually we are weak, but together we are strong. Would we not be stronger if we stepped outside the box of autism and embraced the reality that neurodiverse people need each other, as children and as adults, to thrive in a society designed for a typical or idealized neurology?

Adults should certainly have a place at the table -- those who can speak for themselves (and their children) and for those who speak only of their experiences with their children. But why limit those adults to people with autism? Few people with disabilities face the peculiar stigma and alienation with their own advocacy communities that people with autism do. Isn't it time we all learn from them, too?

AutiDiva said...

You are absolutely correct. Given the fact that most Autistics understand that the overall goal will always be to create an existence where neurodiversity must and will always have a Seat at the table, in his defence, if he'll allow me :) it is probably such a given now that we sometimes do not include the "label" in our electronic language.

Bottom line, I aspire and work towards seeing the day where we no longer need labels, where I can simply show up Patricia. There Is No Spoon. There Is No Box! Now That, would be AUsome :0)

Stephanie said...

AutiDiva,

The thing with labels, though, is that they can be tools for understanding as well as alienation. Before my children were diagnosed, I found the autism diagnostic criteria and figured it out for myself. The label empowered me to look to find people who could really explain to me what my kids were going through. I've heard autistic adults describe going through their entire lives without knowing there were other people like them, and the label being the key to finding those people.

It seems to me that the labels themselves aren't the problem; it's the way people misuse and abuse labels (and the people they attach to) that's the problem. But the same thing can be done with drawings and stories, too, even if there are no labels.

Felix Garcia said...

My children were autistic and when i left the house they needed Home Care. We gotta be more aware and more willing to help out those people who have autistic children.