Yesterday, I wanted to focus on some of the negative email and responses I received in light of speaking out on vaccines. There was another side to the response I received on DailyKos and elsewhere - and that is the way people relate to, advocate for, and participate in advocating for Autism support.
Up front, I'm going to say that even without that diary, on a daily basis I sort through a lot of email regarding autism related issues. I hear it from para professionals, support staff at my son's school, family members and politicians. Online forums filled with neuro-typical parents and autistic adults; as well as care givers, medical professionals and educators.
There is a HUGE divide of opinions and some of it can be VERY bitter. I want to go through some of this, though, knowing that in the end, some will seriously disagree - and I think an open debate is good.
It is sometimes difficult for people to understand how complex the divide is amongst advocates. Sometimes, it is easier to use an example. I'm going to chose a simple one.
Many who write about autism will say "autistic child", others will say "child with autism". There are two VERY different responses to the way this is phrased. On one side, you have people who believe that autism should be treated as a trait that isn't seen as negative by default. They believe that saying "child WITH autism" implies autism is like a disease or a negative connotation. The prefer "Autistic child" as an example. Their argument: "You'd never say 'A child with blindness' " I've heard this argument repeatedly and it is one that I largely accept.
In an email a year ago, someone who is a high school student diagnosed with autism wrote this to me:
I will always be autistic. It is not 'with' me at the moment, it is who I am. It isn't an affliction and people should accept it as part of what makes me unique.
On the other hand, you have parents including some members who are adults with autism who believe in saying "person WITH autism". This is - at least in my experience - most of those who believe in the search "for a cure" or a pharmacological solution to issues they manage in the autistic community. I spoke to another member of our community I know who believes in this who put it to me this way:
When I was young I didn't have access to the drugs and treatment that are available now. I pray for a solution.
One phrase, two VERY different responses from members with autism. This is a real divide that happens in how we view autism and how we advocate for autism. It also creates very real conflicts for those of us who have spent considerably amount of time working on helping to build support where it is needed.
To that end, there are two large groups - Autism Speaks and ASAN who have VERY conflicting views about the strategies that people should take toward autism. I will be honest here: I deeply disagree with both approaches, but I know people who are strong advocates of both and I respect the advocates of both groups for their accomplishments. In the end, when I agree with one or the other, I work on those efforts, when I disagree, I mostly sit it out.
One of the clear defining differences for years has been that Autism Speaks was on the wrong side of numerous issues - from their weird belief that vaccines led to autism (which they have recently recanted) to their exclusion of members with autism to participate in the leadership of their organization (which I do not know if that has been remedied). As a result, there has been an ongoing war of words between the organizations of which most of the time, I have agreed with ASAN's position. You can read much of it in theirdeclaration here.
In the next phase, we have to really look at the strategic differences in the way communities look at handling Autism. Autism Speaks has traditionally focused on "A search for the cure" and been a significant advocate of a broad range of therapy which includes behavior alteration through aversion practices and treatment. Other groups, like ASAN, stand largely opposed to such measures, pronouncing that these behaviors should not be forced out through aversion as they are part of the identity of a child, etc.
This is VERY complex and difficult ground for members who have autism or who love someone with autism. ASAN has noted on many levels that it supports those with all levels of autism, but the level in which members are prepared to discuss those realities is often not uniform - this doesn't impact the organization, rather a statement that many within the autistic community also seek to advocate specific conclusion for other members with autism they may disagree with.
The first time I met Timothy, an adult with autism, we spoke for some time about the issues of his lack of stimuli, and his need for constant pressures and release. Timothy slept at night in what would be marketed as a 'pressure jacket', widely available and used by many professionals. He also took drugs, especially risperdal, to repress violent rage problems and also to control his issues with his over sexual self fulfillment.
These are the issues that don't fit neatly into either basket. While Autism Speaks would seek a cure, Timothy would tell you he is treating his issues in a way he finds effective to make sure he can work in the community.
The wide diversity of issues associated with autism leads to real misunderstandings, even amongst those who have autism, as to the right practices for others with autism, including their rights at times to seek their own solution we may disagree with.
Because of this diversity within the spectrum, you have a range from children who can be seriously dangerous to themselves and others, a small portion but a very real situation. For others who have been diagnosed as autism, the way in which we address those situations can be.. well, not friendly.
Several years ago, I noted here that our son was one of those with serious self harming and violent aggressive issues; and due to issues we had considered and begun working on a treatment plan that involved year around semi-residential care facilities. Yes, that also meant that over the past few years we've had to do a few forced hospitalizations when the drugs were not as effective.
Invariably, such discussions lead to two deep divides: either we should be seeking a cure - by those who view autism a condition that should be cured, or that our actions may be 'over zealous' and 'bordering on child abuse'.
The first time I ever heard this was in a private email based group, in which someone confronted myself and another parent with this as commentary:
It sickens me that you seem to discuss forced hospitalization as anything but imprisonment.
This isn't uncommon - even in online forums, like Autism Awareness on LinkedIn, Autism based blogs, etc. the diversity of opinion is HUGE. In the end, I have never found a single solution that I found was perfect for every family unit, and I seriously doubt there is one.
And this ends up with the issue that we run into most often: what creates the autistic community? The official UN thought is: Nothing about us without us. This is a fitting and important thought, that the development of work for members of any diagnosis should include members who have that diagnosis. This is an important moment and has been of key significance to almost every disability group I know of, or for which I have been an advocate.
The said, there is a difference between "nothing about us without us" to "the only advocate for us is us". This second standard is a difficult one, and one far too many communities have looked to adopt. Frankly, no group that I know of - of any sort - has ever made that work. While ASAN and Autism Speaks are large, many local communities around the country have formed their own inbuilt networks of advocates from doctors to lobbyists to family members and they all fill important roles to help make sure that we get the results we need for success.
So, let me end with how I have come down on this issue - the part that I'm sure will infuriate many:
(1) I use autistic child for the most part (I occasionally slip) because I believe that is the proper way to discuss the situation.
(2) I believe the autism community includes more than just those with autism. I believe family members, direct support including paras have their way touched in a way that is unfathomable to people outside of the community.
I have been both ridiculed and praised for this by different groups, including members who have autism. In the end, if it infuriates you, that is fine... there is, to me, a difference between saying: I have autism (I do not) and saying: my life is significantly different due to autism (true for many). As well as outside allies and others.
Parents who have diagnosed autistic children who also suffer from agressive SIB (self-injurious behavior), Bi-Polar disorder, manic depression, OCD, violent outbursts, etc. they are not only the best advocate of their family member, at times they are the only advocate. They are also the only one who can really understand the situation. I've met people diagnosed as autitics with an IQ range of 65 and up, some exceptionally bright, others who struggle with potty training as near adults. As an example, my wife, bless her soul, changes the bedsheets every single day for our son.
When we think about the community for ME, it is the group of people who are both the best advocates and have been deeply involved. There are numerous groups around the country with members who are diagnosed autistic who believe that this is the correct way to look at the situation. There are other groups and members who are significantly opposed. I've heard from both in at times VERY bitter terms.
(3) Don't make broad pronouncements on autism. The way autism impacts one family can be drastically different from the way it impacts another. There are numerous people who are diagnosed autistic who will live long and full lives with a bright educational future and they will set their own path in the world. There are other children with autism who will be unlikely to ever self-support themselves. Your personal experience with autism doesn't give you the moral highground over anyone else with autism.
I find myself victim to this sometimes. Your own experience can be hard and you may want to relate it as though it is the ONLY way to look at the issue. I don't know of a single person with autism or family with an autistic member who hasn't at least once wanted to start out with: "let me tell you what it is really like". I do it sometimes. I almost instantly wish I didn't when I do.
(4) Disagreements do not mean people are your enemies. I've been party to more than one serious, stupid fight over things like "autistic child" and "child of autism". Or, "PRTF vs Out bound care". Do not turn fights into the idea that someone is your enemy. They aren't. For the most part, people are trying to do what is best for their family and they hope for the community as a whole.
(5) You represent yourself and those who have asked you to represent them, that is all. I often get bold pronouncements that declare an opinion is speaking for the entire population touched by autism. Like an email I quoted yesterday..
I've read your thoughts on Vaccines, and you should be ashamed of yourself. You minimize what autism is like for parents it is not about a sleepless night, you idiot it is about having your life ruined and watching your child turned from a beautiful baby to a victim of big pharma.
The implied is that all parents of autistic children feel this way or that it is the appropriate response. I don't know this person's experience so I can't express how she feels. Just as I can't speak for every person with autism, neither can someone with a different viewpoint.
When we speak of autism, I always tell people: it is a person, not a brand. And the issues are wildly different from each person. The story of each family and caregiver, doctor and para are different. Take it one by one and find the right solution. Build into public discussion support for programs that work on a granular level.
I've spent 14 years working with numerous teachers, para professionals, legal authorities, legislators and social support forums, and I'm sad to say the division and infighting between so many different groups has made getting legislative work done unfortunately difficult. It is much more difficult today than it was 6 years ago, and no matter how we want to frame it that is the reality.
The number of messages I've received about phrasing - from both sides - is always significant. In the end, I tell people: you are free to disagree with me. That doesn't mean I will accept or bow to a premise, and it doesn't make me or others 'bad people'. We have to start working together and listening more to each other to try and achieve the hard work that lays ahead.
That, or we can spend a ton of time fighting each other while legislative efforts stall.