Thursday, November 21, 2013

Autism Advocacy. Where do we go from here?

Last week’s furor over the Autism Speaks op ed and my subsequent resignation from their science board may have died down, but some significant challenges remain.  

What we need - a map to find our way

The thing that concerns me the most is that we are a community divided.  The energy and anger directed from one autism faction to another this past week might have moved us toward a constructive goal, if only we could have found common ground.

Because the fact is, we should have a shared goal.  Several goals, in fact. Here are  a few of mine:
  • I want effective early identification of autism across genders/races/cultures/socioeconomic groups so that every child can be matched up with the services he or she needs to succeed;
  • I want us to recognize and support undiagnosed adults who struggle because of autism;
  • I dream of effective and sufficient services for schoolchildren with autism;
  • I wish for insurance coverage for autism therapies, for adults and children;
  • I want to see community supports for adults with autism;
  • I want therapies that work for people with social or communication challenges;
  • I want therapies for the medical complications some people with autism suffer;
  • I want to understand how autism affects our minds and bodies as we age;
  • I dream of “fixes” for the most severe autistic challenges – intellectual/cognitive functioning included.
Do you want those things?  Then “I” becomes “we” and we have a community.  Do you want more?  I can embrace that too.  The fact is, we need to be working toward goals like these, and not against each other.

Why do we do that?

I think the answer lies in words, and how they make us feel.  One video is played; one article is read.  Some people see a cry for help, while others hear an attack on their very being. 

Might they both be valid points of view, albeit poorly expressed?
  • I can understand that a young adult with autism might say, “I don’t want to be changed.  I want the world to accept me as I am.”
  • I can understand the adult with autism who says, “I hate being disabled by autism.”
  • I can also understand that a parent would say, “I’m terrified about what will happen to my child when I’m not here.  He can’t take care of himself.” 
Whatever I may think about the speaker, autism, or disability, I owe it to each of those people to respect their opinion.  Even when I don’t agree.  Because the fact is, I’m not them.  I cannot truly know their lives.

Autism is a very diverse condition.  It touches children and adults, guys and girls, geniuses and folks with intellectual disability.  It’s hard for any one of us on the spectrum to imagine how different another person with autism may be from ourselves.

We must always remember that the most challenged members of our community have the least ability to speak for themselves.  What do we do about that?  Ultimately, we want to help autistic people with major communication challenges, problems in cognitive functioning, and other medical complications stemming from autism.  But that's a long term game - there are no such fixes ready to roll out this year or next.  That said, it's the goal of much basic research which is (sadly) sometimes criticized as wasteful by people who do not recognize the very real medical side of autism.  It's more than a behavioral issue for many of us; schools and community service alone simply are not enough.

What I do know, is this:

We are not going to solve our community’s problems unless we pull together.  Our divisiveness isolates us and that is the last thing we should want.
  • Who’s going to speak for us, to fight for insurance coverage?
  • Who’s our voice in education?
  • Who’s going to educate the public, and build a more accepting society?
  • Who’s going to do the basic research to solve our most severe problems?
  • Who’s going to develop communication or organizational therapies, and disseminate them to the community?

Some say it’s Autism Speaks. Some say it’s the Autism Society.  Some say ASAN has a role to play and others turn to the government.  Is it some or all those groups or someone else?

How could we pull together, instead of pulling apart?


That is my question for you tonight.  I wish I had the answer.  Perhaps together, we can find it.

29 comments:

Kacky said...

Hear, hear John!
1. "Awareness" is last year. Let's talk neuro-diversity!
2. Bring adults into the discussion, and presume competence!

Jessie said...

Right now. I have nothing to share but thank you. You are right. We need to pull together as a community. We all have different experiences but we all share the love for our loved ones abd the desire to make things better. Your list covers many peoples hope for change. Thank you.

Unknown said...

You are correct in that we need to work together as a community with specific goals and a strategy. Adults with Autism are the primary voices. It is necessary to give us the support, tools and assistance to lead the change.We know what it's taken to get us where we are today, what was needed (and not available) and what we'd like to see be put into place for ourselves and the upcoming generation.

Mack Bahr said...

I think you are on the right track with the garage school you've started. We need more schools like that - that focus on what the kids are GOOD at and are interested in.

We've just given up the struggle of our 12 year old son with AS being in the local public school. There was NO flexibility in their expectations of him fitting into the convenient box into which most 'normal' kids fit. It was bad for him, it was bad for my husband and I as parents - and it wasn't good for the 'normal' kids to have their learning disrupted, as well, by that inflexibility. So, now we are home schooling.

We need to recognize these amazing kids sooner, we need to find the best ways to school them, learn their interests and talents and guide them towards that and then support them into an adult life of productivity.

We also need to find a way to create a better and more supportive community - for the kids AND for their families. Too many of us feel isolated and alone, even when we know that there are so many other families struggling like we are.

But I can't seem to find my magic wand… I know I left it somewhere… *patting pockets*

Jeanne Medina said...

Autism Speaks was the loudest voice because they used the power of fear. Many Adult Auties and Aspies and some enlightened parents have found beautiful answers along the way, but our need for separation from society's little boxes, or our need to hide while we are squeezed into them, for fear of bullying, misdiagnosis, and drugging, has kept our voices silent. The time for that is over, because our silence will mean that the voices of fear will rule and lead to dire consequences for us. It's time for those who are able to speak up, to come out of the closet and say, "No. This is beautiful mind is Autism and it ROCKS!" They pour all that money into their campaigns but the beauty and power of our Light will send them scuttling back into the shadows. Education is the cure for ignorance. Love is the cure for Hatred. I admire your ability to communicate so clearly and keep your equilibrium during such a tumultuous time. Respect.

Jane Doe said...

High functioning/low functioning distinctions and saying that some people need a cure and are not ok the way they are is divisive. Also I don't really want therapies services and supports to be delivered through the health insurance system because that is leading to a medical model of disability. I want those things to be funded through public disability agencies.

Shanti said...

We need to remember each of us can only speak for him/herself. I don't think that there is any voice that can speak for everyone on the spectrum. I have learned a lot reading blogs and commenters this week. What I have learned is that our respective situations give us radically different experiences of autism and no one can speak for everyone. I believe every person on the planet wants to be healthy, independent (or at least capable of being independent) and respected. All We can't just dismiss and point fingers at others that don't agree or have a different perspective. Let's challenge ourselves to understand each other better.

Ann J Mclean said...

Oh John We Need 2 Clone You ��

usethebrains godgiveyou said...
This comment has been removed by the author.
auntiegrav said...

Thanks, John. I agree with you on all of the points. It's easy (especially with AS) to drift into trying to solve all of the world's problems before solving this one, though (health insurance vs. government services, etc). I don't think we've really begun to scratch the surface of the awareness issue, though. I think of all human brains as being defective in one way or another (buggy code and hardware), and the AS just happens to be a broad range from a few specific problem bugs to the various combinations of bugs up to an accumulated level that is seriously disabling. The first thing that has to go is the concept of "normal". There is no such thing as a perfectly normal human brain, and far too many people believe that because of quantity, they get to put themselves on a pedestal: resulting in the lack of compassion, the bullying all around us that is called "capitalism", and a lot of angry, fearful situations that don't have to exist. People really need to learn that different is not only not 'less', it is necessary.

Rich Guszczynski said...

I want a cure, nothing less, and I want it now!

Perla said...

There are autistics also outside the USA, there are small communities scattered around the world. In my little part of the world (Greece) as the chairperson of the one and only organization created from and for autistics (classic autism, Asperger's and HFA) adults I am overwhelmed by the many Autism-Speaks-like organizations existing here in Greece who follow the very same tactics of fear usually pairing with parents who want to cure autism.
The medical model of disability for autism is the one these organizations promote and accept for autism disregarding the fact that the voice and choices of the autistic adults are rarely if not at all taken into account.

Our organization promotes the following:
- We also want us to recognize and support undiagnosed adults who struggle because of autism;
- We also dream of effective and sufficient services for schoolchildren with autism in a country as Greece that is being torn apart by the financial crisis, strikes and unpaid teachers;
- We also wish for insurance coverage for autism therapies, for adults and children;
- We also want to see community supports for adults with autism;
- We also want therapies that work for people with social or communication challenges;
- We also want therapies for the medical complications some people with autism suffer;

I personally do not agree at all with early diagnosis and therapies. Only after the age of 7 years is a child ready to be diagnosed with some accuracy. The notion that autism must be detected as early as possible is false and it is based on creating income for those who offer these services of diagnosis and therapies.

I am very much against “fixes” for the most severe autistic challenges as such fixes also include the need for early diagnosis and therapies depriving the child of a normal carefree childhood until the age of 7 years!
After the age of 7, or at the earliest at 5 years, I do agree that a child should be offered the therapies it needs.

Best regards,
Perla Messina
Chairperson
Greek Association of Autistic Asperger and HFA Adults - Athens, Greece
www.autismos-asperger.gr / www.aspergerhellas.org

John Elder Robison said...

Perla, if you are against "fixes" for the most severely challenged autistic people - a population that ends up housed in group homes or other institutions when parents can no longer care for them - what do you propose to maximize potential and quality of life for those people?

In the absence of some breakthrough I don't see how we will deliver that population a meaningful quality of life improvement.

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

It's changing, as it becomes more possible for families to stay intact. My nonverbal, behaviorally-involved son has been in residential care for 20 years and is now living at home with me. We've taken care of a lot of issues in the past 6 months that were not being addressed. I pulled my hair out and never had a decent night's sleep. But now there is funding and community supports so he can be here where he belongs. He's thriving more in the past few months than he ever did in care. I don't know how he has forgiven me, but he is giving 110% every day. We saw you in Augusta Maine John, but didn't get a chance to talk with you. I am also the domestic partner, for the past 15 years, of someone with AS and I thank God every day for that man. If only families could have the supports in place, and not wait 20 years like we did.

John Elder Robison said...

Kacky, you are very lucky to have that family togetherness. More often, I hear it going the other way. Especially with the increased economic hardship these past few years

Lisamaree Dom said...

Kacky; I am smiling to read of your story. It is my wish that my children always live with me while getting lifelong support in evidence based therapies that improve their independence & quality of life.
John: I would like to copy your 'manifesto' for agreement for my own blog.
I too identify as Aspergian and I have great difficultly imagining the motivation for such negative statements about autism. It can only be a self fulfilling prophecy where parents believe that there is no hope, and therefore do nothing, or go out of their way to pursue extreme therapies as "cure" - which deplete everyone's resources, not least their child's.

I speak also for my children, who do not have the ability to debate for themselves. The do have the ability to do so many more things for themselves independently and with dignity thanks to evidence based support. I wish that everyone could avail of such supports in a way that suits them, on their terms.

The move must be for positivity, then all else you describe can be done with belief it will improve the quality of life for all individuals in the spectrum.

Alexandra Bugge said...

Let me first say that I'm in no way begrudging teachers. This goes farther up.

My dream is that one day ALL school teachers will be required to be "special educators", and that becoming a teacher will require studies and training on understanding(as much as is possible) the differences in children with autism and how to communicate effectively with them.

I strongly believe if our children are intertwined in the public schools, all the teachers should well informed and educated, so they don't have to say to a parent
"I've never seen anything like this before"

Yesterday I spent an hour in an IEP meeting for my son. And while I left feeling that they listened to my concerns, suggestions and requests, I also left with the feeling that they are as lost as I am. And it's clear to this particular school system isn't even close to being on the right track for effectively teaching students with ASD in hopes of reaching their full potential. The way I see it, accommodations are being made to ease their load, but this has no real academic or social benefit.

Ruth Bainbridge said...

I firmly believe that one of the biggest steps toward change is going to be to change the label we have been given . Autism? Selfish? Really, that is not who I am and not who you are. Different Operating System. Not disabled. Different. This thought alone could rocket the community. Please let me know what you think.

elena mary siff said...

The brain is not understood and will not be for a very long time to come..there is no cure for autism and we must all develop and secure the vey best supports for our children with autism and other brain related differences. I have spent the best part of my life finding and creating these supports for my adult son and he is somewhat content in his own home with support...Do I wish he had been born "normal"? You bet! Do I wish I could have put the immense energy expended on him elsewhere? You bet!! But those were not the cards my family was dealt. My only piece of advice is to listen to your kid and fight like hell to get him what he wants and what you think he needs and never give up!!

forsythia said...

It was just pure dumb luck that our grandson's parents found Beltsville Academy, a public school in northern Prince George's County, MD, with a program tailored for a large subset of autistic students. Our grandson, who tried and failed to make it in a very good, local parochial school, has found a welcoming home at BA. He's now in fifth grade and he is happy at school. He attends regular classes all day now (not the case last year, which was his first year), has a dedicated aide, uses his NEO for writing, and receives accommodations and services--esp. guidance and support from his autism homeroom teacher. What a difference a school philosophy of flexibility and accountability makes. Unfortunately, this program serves just the kids in the northern part of our sprawling county. I hope that, under our new superintendent, the program gets replicated throughout the county.

Kacky said...

"Cure" is a phase many of us seem to go through as parents. Most of us don't have the resources or standing to take it to dangerous levels before it passes, or to hurt other families with it along the way. I do remember auditioning for a job reading audio-books for some organization whose name I can't even remember. I was grilled as to why I did not have my son on testosterone therapy, which I guess was a fad at that time. The person was quite militant and I did not get the job.

Kelly Green said...

Let's get this information collaboration going. An Autism summit highlighting Autistic people seeking this positive change. A roundtable of different thinkers to address these excellent talking points. All Autism organizations should get behind this! We need Autistic leadership to help us re-brand Autism to the world in a much more human and real way! New approaches to teaching and managing from the inside perspectives. It is time for the world to realize many people have and can easily understand Autistic traits. Relax and accept that we are all somewhere on the spectrum when you look closely.

AutiDiva said...

1st off, we need to remove the following words from Being Autistic: have, cure, condition, disorder, disease, syndrome, high mid low functioning, suffering, early intervention, Special, disAbility. Then, we need to focus solely on the assets, strengths, talents of the "autistic personality type" vs the "neuro-typical personality type", noting specifically that Every Human Being is Born, through egg and sperm conception within a human womb, with Both Personality Types, to Varying Degrees, from one end of the Human Genome Spectrum to the other. Plain and Simple. Once we embrace this inalienable Fact, we can start to Build this civilization into what it was always meant to be: Neuro Diverse because We Are All Differently Abled. Period. Just like Eye Color. There are No Two, or Three, or Four, and so on, Set of Eyes, on Any Human, including Twins, Triplets, Quads, ext.: which are the same. Every Single Humanoid Being has a Unique Eye. That is why it is called the "window to Your Soul". No one but Me can see mine. Then, we need to have the most difficult conversation perhaps to happen yet: Exactly Who is Autistic and Who is Not and what that implication will mean, worldwide. Lets put Autism Speaks "to bed, for a long sleep", meaning, lets take the spotlight off them because by opposing and constant Speaking, Writing, Ranting, Raving about them in the blogosphere, BlogTalkRadio, Online Social Media App Groups/Communities, we are giving them free press and mega worldwide attention. The best way to shut them down is to pretend they don't exist, now. Their work is DONE. Why? Because, on a higher level, they have served to bring out, and together, folks like:
Me, Patricia Elaine Chandler, you John, Ari Ne'eman, Jenny Dean, Lydia Brown, Ryan Comins, Kate Palmer, Sharon da Vanport, Ibby Grace, Leonora Gregory-Collura, Michael Buckholdz, Rose Guedes, Daniel Svoboda, Jason Ross, Rayn Kleipe-Green, Yvona Fas, Alison Alpert, Karl Wittig, Steve Katz, Kerry Magro, Michael John Carley, Paula C Durbin-Westby, Alex Plank, James Durbin, Kerima Cevik, Amy Sequenza, Marc Rosen, Gordon Cole, William Stillman, Debra Lipsky, Donna Williams, Maria Illiou, Emily Tinton, and a whole host of Other Brilliant, Talented, Inspiring, Hardworking, Empathetic, Caring, Loving, AUsome Autistic, Asperger, Fragile X, DIFFERENTLY ABLED (Anthony Pfieffer is Director of the Differently Abled Department at CUNY Medgar Evers College in Brooklyn), Innovators and Pioneers of the 21st Century, from All Over The World/Universe! Because, WE ARE THE RESIDENT, and FUTURE, AUTISTIC Scholars, Educators, Researchers, Clinicians, Physicians, Counselors, Life, Academic and Career Coaches, Civil Justice Workers, Mediators, Future Legal Court Litigators, Defenders, Prosecutors, Lawyers, Justices, Law Enforcers, Policymakers, Elected Officials, and Professionals, in our respective areas of expertise. We are The ONES who are going to care for those Autistic Children, Teens, Young, Middle and Senior aged Adults who cannot today, or may never, be Abled Enough, to care for themselves. We are going to Stop Sending our Children away, to institutions, group homes, assisted living facilities, and have the Parents who gave Birth and Life to Us, Care for Us in the Homes where we were Conceived. For those Autistic Children, Teens and Young Adults, who have the potential too, WE Accomplished Autistic Adults Are going to Show them the Way to Care for themselves, US AUsome Autistic Adults, just as We Were Shown the way to become Who We Are, today. So, what say, We start building a Coalition, United State by State, from NY to CA, and create our Own Summit To Washington DC 2014, so Capital Hill can truly see just Who ASpks has been Talking About, for the last 20 years! It's Time John. Are You Ready?
I Am :-D
Patricia Elaine Chandler
We Must Be "Autistics Speaking LOUDER THAN EVER BEFOREe!

AutiDiva said...

Kelly, You SAID IT! Beautifully, Succinctly and Simply! And that's what this is all about.

My autistic personality had me saying it the long-winded way because I'm a writer and I'm a natural research scientist from my former profession in the life sciences industry, I'm entering school again this coming spring and I am passionate about Life.

Autism is my passion because I am Autistic and Proud and even with all my traumatic life challenges from conception, all through development and even still to this day (my struggles are Not due to my being autistic but rather Others ignorance, fear and stereotyping acceptance) if I had to be born again and had a Choice, THIS time, I would want to Born just as I Am, Naturally and Brilliantly and Ultra Sensitively AUTISTIC! :-D

I just turned 50 and my outlook on life is finally changing. Aside from the severe mood swings, brought on by this unbalanced earth environment of artificial sensory stimuli, I Love Life on this Planet <3

suzanonymous said...

I agree with your aims, John.

suzanonymous said...

I agree with your goals, John.

For my part, raising serotonin (5-HTP or Saint John's Wort) significantly helps me. I'm still a weirdo in Neurotypical's eyes, but I find people's looks and comments much less galling, am more often able to let it go. I still am able to use great focus on tasks, and even to the point (frustratingly) of not eating, drinking, and taking breaks. It does not change me, but it makes life better.

I also find that I do a lot better if I deliberately attempt to activate my prefrontal cortex every morning (get thinking the way I think, via reviewing past journal entries for at least 15 minutes). PCP therapy helped me a lot. Tony Attwood's book explains it. I just did it on my own.

I mention these things because they may help people understand that it's possible to see improvement without changing your nature. I'm 53 and I remember being very intensely inwardly focused when I was young -- how dare anyone try to change me, I'm not broken. No one's perfect, everyone could use improvement.

Perhaps I should mention I'm not officially diagnosed, but relate to a lot of what Tony Attwood describes in his great book, and know I behaved Aspie/Autistic as a child in old movies (OTOH, all of my symptoms could be explained by child abuse, which was so bad between the ages of 1-7 that my growth chart was drastically affected -- went from 75th percentile in height to 25th and then back to 75th. Only my grandmothers found the abuse wrong or alarming, and sometimes my mother. That could be the Aspie thing, the trait of being bullied, so my profile could be Aspie. Kind of a cyclical situation there.)

I think you've also mentioned before that you would like a better definition of Asperger's and Autism. I agree. I find it particularly ridiculous that being bullied is a symptom. Is that a symptom of a sick person or a sick society? Who needs fixing here? The Aspie or the bully, the idle witnesses, and the social mores?

Bradley Gants said...

hello mr.elder my name is bradley gants. i have a case of autism and i was wandering how you figured out you have autism. you see it took about seventeen years for me to figure out i had autism. i'm reading your book look me in the eye and i think its very intriguing. you and i have alot of similarities in life. email your response to me at this address b-radlost@hotmail.com

John Elder Robison said...

Bradley, if you are reading Look Me in the Eye you will learn about my diagnosis in the chapter called A Diagnosis at Forty.