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.
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| 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.
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.
Comments
1. "Awareness" is last year. Let's talk neuro-diversity!
2. Bring adults into the discussion, and presume competence!
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*
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
In the absence of some breakthrough I don't see how we will deliver that population a meaningful quality of life improvement.
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.
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.
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!
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
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?