Why Factions in the Autism World Can't "Just Get Along"
Recently, national radio talk show host Michael Savage caused an uproar when he called autism a 'racket,' the 'illness du jour' and a 'fraud.' Parents and professionals reacted by suggesting that he be ignored and that he be fired. I was not surprised by the conflicting reactions. This is, after all, the autism world, in which there is little consensus.Sullivan then goes on to say that, while controversy seems to be an integral part of the autism world, we can surely come together to act on certain common goals:
Composed of parents and professionals from public and private entities, a coalition could succeed if members acknowledge, then table, their disagreements and focus on mutually agreeable principles. Areas of discussion should include how to:All of this sounds wonderful - and the sentiment is certainly welcome. But in my opinion, the answer to the question "can't we all just get along?" is a resounding NO!To achieve these goals, turf battles must yield to impartial assessments of how services can be streamlined and sustained.
- Sustain or increase funding for research into etiology and treatments
- Provide both a diagnosis and a substantive treatment plan
- Create educational alternatives
- Offer affordable medical care and treatment options
- Plan for long-term needs of the aging population.
Why?
Sullivan's proposed areas of consensus are precisely the areas in which members of the autism community disagree most profoundly.
Should we be focusing on research into causes and treatments? That depends upon whether or not we feel we already know the cause of autism (many people feel we do) - and on whether we feel autism is a disorder to treat or a difference to celebrate (people disagree vehemently on this issue).
Is a universally-agreed-upon diagnostic and treatment plan in our future? This seems highly unlikely, as parents, professionals and adults with autism wrangle over the ethics and effectiveness of behavioral interventions, developmental treatment plans and biomedical treatments.
And don't get me started on education and adult services! Should we be fighting for inclusion or for specialized programs? Should we focus on academics, social skills, behaviors or life skills? How should we manage transition to adulthood? Should we be creating more group homes, working to build independent living skills, or providing more services and supports for adults with autism to remain at home with their parents? What kinds of job training is appropriate? And on and on it goes.
What's your opinion? Is it possible for the autism community to come together on the issues outlined in Sullivan's editorial? Or will we continue to battle one another over unresolvable philosophical, ethical, and scientific dilemmas? Vote in the poll - or express your opinion in comments!
Comments
The fight will continue until there’s a definite scientific discovery that will put to rest what nowadays are just theories.
The education/therapy methods are also controversial not so much because of parents and autistic adults, but because of the authors and therapists that use each of those models and will bash one another and tell people they are the only effective treatment there is, and parents should not “mix” one with the other, which in my opinion is a huge loss. I so wanted to have a mix of ABA, Floortime and RDI available to my child.
As for inclusion versus special class, it all depends on the individual case, if the child can handle the regular classroom in terms of learning and sensory or behavioral issues. Also, it all depends on how the schools are equiped. So I don’t see this as being divisive in the autism community but rather a fight between parents and school districts.
In my opinion there are real philosophical divides that won’t be crossed any time soon.
For example, many parents see inclusion (in the community as well as in school) as an absolute value – as was the case in the MN church situation.
Many adults with autism see any attempt to “cure” or “prevent” autism as being unacceptable.
There are also real philosophical differences between developmental and behavioral intervention (it’s not just a matter of what works best for the child).
Most significantly, I really can’t imagine what it would take to convince people who believe otherwise that vaccines DO or DO NOT cause autism.
Lisa (autism guide)
I do volunteer work related to autism and have children with autism. While I see areas where we can and should be able to work together, my experience is that members of various “camps” find it hard to let go of differences, particularly if you are an autism activist locally. Familiarity breeds contempt. Everything becomes very personal, there are disputes over who deserves “credit” for achievements, and money issues get in the way, too. I still want to work with as many groups and individuals as possible, but reality has tempered my views about what realistically can happen on that front.
I think you raise some valid questions, I don’t think it’s quite as hopeless that there’ll be no consensus on any issues.
The questions you raise can and should be asked by responsible well funded research.
I do hope that objective research will help guide all the camps to some extent. Given the huge range of effects autism has on people, it may be that research will be helpful in dividing the syndrome up into etiologies and predicting who would be helped by different therapies. The expression “When you know one kid with autism, you know one kid with autism” may have more truth in biology than we know right now.
I’m also an example of someone who once more convinced of mercury as a causative, but am now much less so based on research. You will hear the “dead enders” in both camps most loudly. The wishy-washy like myself do not loudly proclaim our views, but I would guess we are legion.
In my mind, basic research can and should be geared towards “quality of life” questions for kids and adults with autism.
As far as the biodiversity camp goes, I understand their argument, but don’t respect it as much as they’d probably like. I would be very happy if someday my daughter was able to express that she is delighted to have autism and that she is annoyed by attempts to cure her. That would represent a breakthrough to me. Strangers with autism don’t neccesarily speak for her more than I do. An absolute “let it alone, don’t change anyone with autism” would in my mind be an extreme minority view. Your mileage may vary.
As far as treatment goes:
First do no harm.
Accept that, like many other syndromes, we may not understand the etiology, but still be able to treat it.
Centuries before penicillin, people used to eat ripe (moldy) cheese when sick, and smoosh moldy bread on cuts. Kind of gross, but at the time, that was state of the art microbial therapy.
It is unlikely the “Old Wives” suggesting that would have said they were doing so to prevent the next generation of bacteria from forming by creating faults in the bacterial wall.
Had it been taken seriously and studied then, it might have lead to breakthoughs even way back when.
The mechanism for how general anesthesia works is not well understood, despite our ability to use it reproducibly and generally effectively. It’s a great boon for medicine that we have it, however it works.
Exploring therapies, and yes, I’m thinking of one beginning with “ch”, does not mean you have to accept all statments made by advocates of that therapy in order to find it useful.
Arguments always will occurr in directions of research, and we all have favorite theories on etiology or treatment that would like to be explored. Good science will help illuminate the topic, and can help us to at least figure out the right questions.
“Composed of parents and professionals from public and private entities, a coalition could succeed if members acknowledge, then table, their disagreements and focus on mutually agreeable principles.”
And, as usual, exclude autistics the discussion.
Lisa,
I think your position may be what convinces you on the inability of our community to agree, as writing an even-handed account of autism makes you a lightning rod for the “True Believers” of every stripe. My guess is the majority are probably less dogmatic than your email may represent.
The problem stems from autism being too broadly defined. There are those whose lives would be greatly improved simply by society making adjustments.
There are those such as my 11-year old daughter who is developmentally about two, and has has almost no communication skills, where the problem is not society, it is her autism.
There are very high-functioning autistics who wish to be cured, and their are parents of low-functioning, i.e., with an I.Q. less than 70, who see no reason to seek a cure.
There are several people in the pro cure camp as well as the neurodiversity camp who are reasonable and understand the other side.
However, both sides have their zealots. Their are some neurodiversity supporters who will call you evil, should you lament at all over the condition autism has brought on your child. There are those on the cure side proclaiming if you aren’t chelating your child in a decompression chamber while an IV pumps methylated B-12 into his blood, then you simply don’t love your child. Indeed that accusation is common to the zealots of both. The neurodiversity zealot accuses a non-believer of wanting the perfect child, of hating the child itself.
I am pro cure. There is no cure out there. Even the most helpful therapy, ABA is not a panacea. Also the quality of ABA therapists differs greatly. If ABA can help turn on some synapses which were shutdown by Autism perhaps one day research will give us other more effective ways as well.
I fear autism research being shut down or certain areas being made off limits in the name of nerodiversity. On the other hand I applaud their fight for better treatment of autistics.
BS”D
I concur with jypsy. Until autistics and our viewpoints — including respect for neurodiversity — are fully included in advocacy efforts, rather than patronized, we should not be expected to “just get along.” Indeed I view the patronizing and infantalizing by parent/proffessional advocates, with the childlike puzzle piece logo of Autism Speaks (and the puzzle piece motif generally) being most symbolic of this broader problem, as a far greater threat to autistics and our dignity than one ranting ignorant conservative shock-jock who does not seenm to have a whole lot of credibility on autism issues to begin with (but who is actually right about the dangers of drugs like Risperdal).
On the other hand, most of the individual parents I have met are very sincere and at least willing to give self-advocates a hearing. I actually have gotten applause from parents — even some members of Autism Speaks! — when I hold up my “I am not a puzzle; I am a person” sweatshirt. It is clearly not so angry as the split over forced psychiatric treatment between E. Fuller Torrey / NAMI and psychiatric survivors / MindFreedom.
My first thought on reading Ms. Sullivan’s op-ed is to wonder why I have a place in her coalition only as a “professional,” not as an autistic.
On the topic of neurodiversity, “Ahem” notes regarding her daughter that, “Strangers with autism don’t neccesarily speak for her more than I do.” No one is saying we do: but we ask that no one claim, or demand, to speak for us, or attack us when we disagree. Or because we can disagree.
In both cases, we ask for the same consideration assumed by those Ms. Sullivan would place in her coalition (and to whom Ms. Rudy seemingly directed her poll: we aren’t all “kids”). Until we have that, why should we cooperate?
Nothing about us without us.
There was a coalition among more than 13 disability rights organizations which denounced Savage’s comments. Wrong Planet joined mainstream general disability rights groups such as TASH and Access Living in addition to Autism organizations such as ASAN and ASCEND by issuing a joint statement calling for advertisers to pull their support of Savage Nation.
http://www.wrongplanet.net/article373.html
Alex – you’re right. My sense is that the one thing we can all agree on is that we want autism to be taken seriously… and that we dislike being mocked and “called out” as morons or wimps.
I guess this is a case of joining together against a mutual enemy.
Conservatives and liberals were able to unite in their patriotism after 9/11, too – but that didn’t change the fact that they have basic underlying disagreements that resurfaced very quickly indeed.
I’m thinking this is a similar case.
Lisa (autism guide)
Because all people are individuals, how autism effects their lives will always lead to differing opinions on all topics, and that individuals expectations. Autism for a child in a parents point of view is always going to be different from that of an adult, and many children at this point in no way gives a hint that they will ever resemble the abilities of that adult with autism. It goes well beyond neurodiversity, autism is a disability and many children are effected differently by this.
I think the topic of Caryn Sullivan editorial is an interesting one. Mr. Savage is small cookies compared to all the other things a parent can be fighting for. Now if the President of the United Stated made such a comment, I’d be upset. However Mr. Savage is really a no body in my eyes and his words has no real impact to the changes that we all should be focusing on. In fact, I think Mr. Savage side-tracked many but he was good practice for some to find a voice and advocate for their child.
There are many aspects that people simply wont agree on however they are much more important issues than anything a shock jock had to say. We may never agree on many things but that still does not make those issues go away, they still need some common resolutions. I don’t think there should be one single focus, there should be on-going focuses on many things in order to help the lives of children. And if we all agreed on everything, every single aspect, then we’d all be less an individual. Autism effects each child and adult differently, and due to this, there will never be one single answer for all but that does not mean that even if we don’t agree that a conversation cant be productive.
All sides could use a big dose of open-mindedness. Often all sides come off as “know it all”s who see those who disagree as crazy.
There maybe only one thing we can all agree on .. Michael Savage is a blowhard idiot. Beyond that, I have my doubts.
Fielding
Treatments/Interventions, if they are even available in your area, are ‘for profit’. Certainly this is a motivation to ’sell’ their program as the only cure. This is not to discount the passion & cost to research and develop, however, the reality is, only in limited cases will the sustained, intensive programs be offered charitably/free/for the good-of-the-child.
If insurance is even available to families, most refuse to cover related costs, especially once you pass the ‘magic’ first 5 yrs mark when services diminish. Or, if the child is HighFunctioning w/o disruptive public behavior displays,’quirky’ equates no continued services needed.
If families are given the chance to choose and carry through with treatments on a large scale, programs with results would rise to the top. As a spectrum child/young adult accomplishes new levels, having the freedom to integrate or be successive with effective support programs just makes sense.
So, no matter how aware you are of autism, how knowledgeable you are of origins & causes, or how phenomenally you feel a program will change your childs life, you are not allowed to have what you can not afford.
I understand all approaches will ultimately works together toward the greater good and goal of autism, but … services that exist, but are not applied to the autism population kind of makes all the arguing and grand standing a moot point.
I can agree that people who want to celebrate autism should be allowed to do so…in a rubber room.
Bert – you say “I can agree that people who want to celebrate autism should be allowed to do so…in a rubber room.”
I’m guessing, based on that statement, that you’re thinking of autism as a single entity -and that the autism you’re thinking of is the most profound variety. But autism is not monolithic, nor is it wholly negative.
My personal experience with autism has been extremely varied. And in the case of my own son, I can say that autism has both limited and expanded his world and ours.
Lisa (autism guide)
I believe that expecting the Autism community to ever agree would be much creating world peace. Human nature keeps us divided.
Rather than sharing warm hugs around a campfire, we should focus on accepting folks for who they are and not define them by their disorders or behaviors. And, indeed, helping each other get navigate through all the red tape and social boundaries.
“Centuries before penicillin, people used to eat ripe (moldy) cheese when sick, and smoosh moldy bread on cuts.
Had it been taken seriously and studied then, it might have lead to breakthoughs even way back when.”
Doubtful, given the germ theory of disease has only been around for less than 140 years.
What divides the two camps is that one side has a healthy respect for the scientific method, and the other side relies on anecdotes and apocryphal stories to make its point.