On April 23, 2007, my article on the politics of autism was published at Blogcritics. I received mostly positive responses, but the one that sticks out in my mind today was comment #11 by Phil Schwarz who asked, “What if, instead of ‘Autism Every Day‘ and ‘Getting the Word Out,’ we had public relations collateral that eloquently illustrated the ‘make or break’ difference that the right kind of help, advocacy, and support can have, in the lives that autistic people lead?”
I think I got so into the politics of autism and autism charities that I merely complained about them without offering any ideas for improvement, something which I have criticized others for doing with regard to a number of other issues like; the Iraq war, the threat of terrorism, and America’s health care woes. My penance for that offense will be to write an article suggesting ways that autism charities could actually be helpful to autistic people.
However, I will need some help, for I can only speak for myself and my family’s needs and have little to no idea of what would be helpful to those whose circumstances are different than ours. Also, as the neurotypical mother of autistic children, I lack the perspective of autistic adults and what their requirements for services, therapy, job training, etc. might be.
So, I’m going to go on my merry way to spread the word in the hope that some of the good people I have met in my travels through the cyberspace district of the autistic community will stop by and lend a helping sentence or two — or maybe even a whole paragraph — to help answer the question: What kind of help, advocacy, and support should autism charities provide to autistic people and their families?
(Yes, I know they need to stop perpetuating negative stereotypes of autistic people, and that they should not speak of autism as if it is a disease in need of a cure, but I’m looking for the positive answers; what they can do, as opposed to what they should not do, and what would be helpful, rather than what is currently unhelpful.)
Thank you all for your participation.
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Original Articles Copyright 2005 by Margaret Romao Toigo
Hi Margaret,
Just another mother of an autisitic child and fellow blogger on autism and politics hoping to find other like minded parents…glad to run into your blog!!!
Margaret,
In all of the complaints that we, the autistic, make about autism cure charities, there is one pervasive theme that seems to never stop appearing. Assuming for a second that they are just misguided and do not really wish to stamp out divergent thought or creative bends forever, they could learn a big thing from real charities like Diabetes America. You see, Diabetes America is a charity that raises a lot of funds to find a cure for diabetes (which I also suffer from), but where it differs from Cure Autism Now is that it has real people with diabetes, not just as members, but on the directorial boards, making decisions about how to address the needs of individuals with diabetes.
I will give another example that occurred in Australia and show you what I mean. Around the time I was diagnosed with diabetes, the Juvenile Diabetes Foundation of Australia was running a lot of ads that were themed around a small boy being told that he is going to have to eat what mother tells him and take injections of a synthetic hormone for the rest of his life. Several people with diabetes, including myself at one point, complained to the Australian branch (Diabetes Australia) as well as the advertising standards board about this ad producing a false picture of total dependence and horror that is a very sharp contrast to what diabetes really meant in my life and theirs, both then and now. The advert was subsequently pulled, and more factual ads based on the testimonials of real diabetics were put in their place.
That is the kind of listening that Cure Autism Now and Autism Speaks refuse to do. The number of complaints their ads receive even when posted on YouTube or other sources, and the exceptionally hostile nature of those complaints, would tell any other charity they are getting something terribly wrong. Not Cure Autism Now. Their actions make it very clear, in fact, that they could not give a damn about the feelings of people with any configuration of autism, and this has a lot to do with the fact that they are not autistic themselves. Out of all the money they have conned out of distraught parents, not one cent has been expended soliciting the opinion of an autistic adult or an autism specialist those autistic adults respect, such as Tony Attwood. Yet they wonder why I keep labelling them terrorists in my writings.
The only, and I do mean only, way that Autism Speaks or Cure Autism Now are ever going to regain credibility is if they are disbanded and built up again from the ground as actual charities with people on the autistic spectrum as members. This would mean a fundamental change in character for them, but that can only be a good thing since they are producing feelings of misery and despair among the same people they claim to be representing. My own perspectives in terms of needs for therapy, job training, or other such bits and pieces, would take a lot more time than is presently available on this site. However, you are welcome to come by the journal I have linked to in the Website space and ask me any time. In fact, by reading what I have written there, you might gain more of an insight into the life of an autistic adult than you might wish. Be that as it may, I wish to inform you I am here (or there) anytime you wish to hear more about the subject.
If you made it this far, thanks for listening.
I don’t know what specific methods work the best in the classroom; a decent special education teacher is the best person to consult there. What parents need to focus their energies on is making sure that their children are in a school where the special educational needs department is adequately funded and staffed, and that when its staff request adjustments to a student’s learning environment in mainstream class, the administration uphold it.
And as for the ‘curebies’, if describing the autistic child who graduates high school or college with good grades, moves into their own home and gets a good 9 to 5 job as ‘cured’ makes them happy, fine. But don’t call autism a disease to my face if you’re attached to your teeth and wish it to remain that way.
Margaret,
Firstly thanks for the blogage and energy it takes to express yourself and put your opinons out there in a world that can’t handle the truth. I’m sure you have had to process a certain amount of backlash for your ideas.
I have dyslexia and struggle with spelling so bear with me. That said: I would like to see services made available for the autism community. Yes, yes I know that there are therapies and more therapies, but what I don’t see are many choices for autie and aspie adults.
1. Assisted living made available on a wider scale and or transistional aid for young adults going from their parents home to life on their own. Not everyone may agree but there is so little help available for autie people to be self sufficient. It’s as though: “Declare them incompetent and put them away” is the only choice for most families. I just watched a show on autism on The View last month and a women with a young adult daughter didn’t know what to do. Huge waiting list for assisted living at astronomical cost when and if you are lucky enough to get in. There is a lot of programs for kids with autism but there are huge waiting list for adults services.
2.I would like to see basic life skills classes, more and better housing, mentor progams or afforable minders or entorage helpers what ever they want to call it, some auties wi need lifetime assistance with the little stuff like getting/going to the doctor or filling out disabliity paper work. Imagine going to the hospital emergency if your non-verbal and on your own.
3. Higher education Services: If my son goes to college will he find a college that accepts him? He is capable of a higher education but if he learns in a nuero un-typical way colleges do not have to allow him into their school. He has to perform to the standards of the college like anybody else. Are there schools for the neurotypically diversed? Can he afford to attend them?
4.Can our public school systems keep up with all the autisic children coming in?
5.Will the DDD’s and DDS govenment programs keep up with services for the life of my son.
6. Public Eduacation for the nuero typical. I would also like to see educational programs for neuro-typical person to better understand autism because I feel the public has been brain washed into thinking that autistic community is a burden to our society. That is why the charitable institutions can get a way with what they do and how they campaign to pull the heart strings of an un-informed public by useing shock and scare tactics to sway the government and public into thinking autism needs to be wiped out and its okay to say this to the autistic community. Because as long as the cognitively abled can be in the dark about the full and productive lifes of the autie and aspie communites then it’s okay to treat a group of people as non-persons because they can and don’t know any different, it may be fear too but I think it’s mostly ignorance.
Okay so I’m off the subject of what can these charities spend the money on and really make a difference.
There are loads of services out there for young children but in 15 years this new herd the (1 in 150) of autisic kids are going to grow up and need adult services and as a parent of an 6 year old autie that scares the #@*# out me. Get ready because here they come! What are we going to do, to help them to be a productive part of our society. And yes they can be healers and educators, engineers and doctors, artist or whatever they want. It’s up to us (The semi-neuro typical) to let them be.
PS Call me Margeret. Lets do virtual lunch!
I would say as a list early identification
compassionate early interventionists
family counciling to deal with parent issues
positive reinforcement (um this is your child and you will see yourself within them(perhaps magnified but yourself)
training on how to deal with well meaning strangers(that don’t land you in jail)
Scholastic materials and support for a childs abilities and not a concentration on disabilities.
Less practise on holds and more on how to build mutual respect with you child(everything is communication if people would simply listen (or watch) and translate)
No child is a lost cause because children are a gift even if one has to make an effort.
Ad campaigns that leave out the word suffer (I only suffer those that refuse to see anything good)
In short compassion, sleeve rolling, teachers and care givers that will look deeper to see what lies inside the mind of a developing child and strive for the optimum result.
If parents need help it is to see that negetive isn’t the way to go. If parents can be positive children learn