Thomas McKean is an autism self-advocate, a formerly institutionalized person, formerly on the board of the Autism Society of America, and currently serves in the board of the Autism Society of Ohio. First diagnosed in 1980, he’s been engaging in public self-advocacy since 1992, and recent trends in the autism community have disturbed him enough to speak up. As a formerly institutionalized person, McLean is well-aware of the challenges faced by those on the spectrum who are either nonverbal or with minimal language proficiency, and the dispute over who should be able to speak for them. Recently some self-advocates with great language proficiency1 have taken on the mantle of speaking for nonverbal autistics, and are drowning out parent voices who are acting as co-advocates, claiming that those parents have no right to speak for their nonverbal children. Other issues that have recently arisen are counterproductive language wars between person first language (person with autism) and identity first language (autistic person) as well as the demonization of a form of behavioral therapy, Applied Behavioral Analysis or ABA therapy. McLean has lately become involved with the National Council on Severe Autism and has become aware of how toxic that type of advocacy is for those who are the most severely affected by autism and intellectual disabilities. Below is the interview.
Thomas, I'd love to hear your thoughts on these questions.
1. How well do you feel the interests of nonverbal people with autism are represented in society as whole?
I’m just an experienced advocate, someone who cares. But I can answer the question...Their interests are not represented in society at all. There is no awareness, no education, no funding, no understanding. While the higher functioning and lower needs of the autistic population have made some advances, the lower functioning and higher needs have not. These days we've even got people claiming they don't exist. I've seen and worked with more than enough to know they do. I am not sure what to do about this or how to fix it, other than what I wrote below.
2. How do you think infighting hurts our community?
It definitely hurts the community. Because how does Joe Average know who to believe? You’ve got one side saying one thing, another side saying another. And why should Joe Average even care what anyone [sic] either way when all he sees is fighting and arguing? How does that help awareness? The fighting and arguing is also preventing other, more important things from being done. Instead of fighting each other, we should be working together toward things like education, employment, housing, awareness, therapies, health care, making diagnosis more accurate and more easily accessible to all. In the meantime, here are some productive things we can do. Be supportive rather than hurtful. People will respond to kindness much more than they will to bullying. Be sure what you say speaks truth and common sense. Say it without rage, without anger, without language policing, without speaking for others, without demands, without misinformation, without bullying. If there is anything you can do to help others in the community out or to make a difference, no matter how big or small or in between, do it. It can be difficult to ignore some of the more hurtful things that are being said and done, I am not always able to do it myself. But this is a much better strategy that will yield better results. I speak here from experience. We need to find a way to address this problem with kindness. We need to stop this needless childish temper tantrum war that has no reason to exist, and we need to work together to move the cause forward. People with autism and the parents have worked peacefully together for years, for decades, with good results. We still can. This isn’t one or the other. This isn’t either/or. It can be, It must be, both/and. This isn’t about taking sides. The other side is not the enemy. We do not need to silence every other voice to be heard. There are other voices that are just as valid, even if we don’t agree with them. What we need to do is stop the fighting, the bullying, the misinformation, and get back to the real work, the real advocacy.
3. How should parents of nonverbal/high support needs people with autism strike the balance between respecting their children's privacy and publicly disclosing information that might be seen as embarrassing in order to advocate for their needs?
A difficult question. One I struggled with myself for over 30 years until just recently becoming more involved with the NCSA. The problem is this question is one of the reasons we haven’t made progress. As long as we ask this, nothing will change. And it isn’t that it’s not a valid question, it is, but it's also the wrong question to ask. To deny what might be “seen as embarrassing” is to also deny truth. There is a dark reality going on here, yes, but it is reality nonetheless. We can’t hide from it just because small minds perceive certain behaviors as embarrassing. There is no way to have one without the other. They also need to get input from their child if there is any they can. There are ways to be dignified. If you show your child respect, that is what matters. If the child appears to have a problem with it, that also definitely matters. Advocacy isn’t for everyone, and there is no law or obligation that says you need to do it or be involved. On the other hand, as long as we all continue to hide the kids in the attic, things will stay just as they are now. We’ll get nowhere fast. The only way people will know what’s going on is if we show them the truth. So the questions to ask…
Is what I am doing allowing my child to maintain long term dignity?
Is what I am doing moral and ethical? Will anyone be hurt by this?
Is what I am doing going to promote affirmative advocacy and an accurate understanding and awareness for the autism community?
I am sure there are other similar questions.
4. What would you most like people to be informed about this Autism Awareness Month?
If I were relating it to this interview, it would be that the more severe do exist. They are in hiding, but they are there. More than we think. We need to find a way to support them and give them, their parents, and their families and loved ones respite and [a] higher quality of life. This needs to be a priority. They cannot remain forgotten.
Also...
Advocacy is about building people up, not tearing people down. It is about working to improve the quality of life for others, not making other’s lives more difficult. It is about making suggestions, not demands. The advocates work for the [individuals and their] parents, not the other way around. These things seem to have been forgotten. We need to get back to remembering them.
1Non-verbal or limited language proficiency should not be construed the same as a non-speaking individual who has robust language and is able to communicate via assisting technology.