Bi-Racial? Disabled? Blended? Acceptance Of Children "Not Like Us" But Who are "Part" of Us

Diversity training has begun on the popular airwaves. CNN's Black in America, with Soledad O'Brian, aims to express the many sides of living as a black or bi-racial person in North America. Watching it, I see a similar theme that may be helpful for parents with autistic children. It is the comparison of being black and having a white child or vica versa. It is the experience of a parent without any disability or experience of it, who has a disabled child. If our children are "not like us," then who are they? To which community do they belong?

I believe it is one of the major sources of tension out there -- why the "recovery" movement is so strong, why acceptance is so difficult. While not accepting the status quo is great in terms of pushing for acceptance and inclusion of disabled individuals, it is not that helpful when the movement takes a turn to fundamentally change the individual's genetic make-up -- to say, in essence, there's something ill, or wrong with you. You are sick and we have to fix and heal you. If we don't, your life will be hard. We've heard it many times -- there is a strong movement against calling disabled people ill. The medical model doesn't fit the human model. While medicine can help us feel better, it can't take human difference away. If it tries, it can't be successful. I'm one who believes that any "progress" in science will see its regression too. In other words, not only will there be ethical problems, but with every seeming "advance," there is also an antithesis. With the advent of our lives being extended, for instance, we have more disability -- this is not to say that disability is wrong, however, with the extension of our lives, it is natural. If you are religious or believe in God, one might say that only God knows why he creates what he does. If you are secular, you might believe that there is meaning, value and importance in the grand scheme of things, and that is still, perhaps like God, ineffable.

I believe that some of my family members have strong autistic traits. My father did not speak until he was six years old, for instance. He became an engineer and has exceptional eye for technological detail to the point of losing others when he talks about it. It is his obsession (sorry dad, but I think you are a brilliant). I crave alone-time and privacy and am much less social than my husband to the point that I think others may not understand me (I prefer to communicate more in writing and am not as reserved when I do so). As a child I used to play alone for hours and would twirl until I passed out (Adam does not twirl). I found idle chatter highly uncomfortable yet as I've become older, I've become better at persevering small talk. Like Adam, my obsessions have been words and letters. I invest in art with words in them or art that looks like it has been written upon. I am a big fan of Cy Twombly. I collect scrabble letters and typewriters. Because of Adam, my interests and habits have become more obvious to me.

So, I guess Adam, who is autistic in a non autistic family, really does belong. We share the same physical features. We even share personality attributes. Yet, he has a label and I don't (which may suggest the nature of labeling and why so many people cringe with labels -- they can help AND hinder). He is "autistic," while the rest of his family "is not autistic." He has a community that organizes conferences for and by autistic people. I cherish that for him. Maybe in a way, I even envy him. For the communities who must really stand and stay together become the strongest. I do not fully belong save for being his strongest ally.

Some people get offended when they hear "autistic person." Some prefer "I am a person with autism." Without re-hashing this debate too much about person-first language, I don't think it matters how we put it. It's the manner in which we put it -- the tone of our voice, and the way that that tone reflects how we feel about people, the words we put alongside autism. It matters that we all recognize that we are all the same despite our differences. We are all equal, even though our contribution and output may manifest differently. We all have the same rights, even if one person is less independent than another. It doesn't all fit into a nice convenient box, that may be true.

As such, I like the comment made on the CNN blog about pride. Autistic pride, gay pride, we all know why those movements have had to spring into action: because there has been too much medicalization and stigma of both, and a need for society to become familiar with the paradox of difference and same-ness. There is no "other." There are only variations of ourselves. So I found the hundreds of comments on this series really interesting in the context of diversity, pride, but most of all this sense of which culture do we become loyal to or do we identify with? In my view, why can't we belong to more than one?:

Lynn Whitfield
Actress

My daughter Grace and I watched the premier of CNN’s groundbreaking “Black in America.” I thought we would have lively discussions around many of the themes concerning black women in this country. However, when she saw the segments on interracial marriage and the children of those relationships, she had a visceral response.

I saw an activist being born.

Grace seemed ready to adapt James Brown’s black anthem to her cause: “Say it loud, I’m blended and proud!” I saw my daughter stand up for the equality of blended people like herself in all her olive-complexioned, big curly afro-like glory. She went immediately to the computer with dignity, passion and everything but a fist in the air...

---

As a parent of biracial children, it feels really good to read such an article. That’s exactly the way I want my children to be about their heritage: proud of both!
It is definitely unfortunate that you have to make a choice between different races. There are still a lot of administrative papers which do not have an “Other” section. Very confusing for the parents and children.
But after all, aren’t we all from Africa anyway?

-----

I am proud of having a child with autism/an autistic child. I believe that being autistic forms an important part of his experience with the world around him -- both from a sensory point of view as well as how he will be treated and regarded by others. He will grow a natural sensitivity to this and his ideas will be shaped by it. It is why I say that he is an autistic person. Jenny McCarthy, because she thinks autism is a disease, and is afraid of it like cancer, is appalled a the notion of calling a child autistic. I see her view as a denial of our children's right to be who they are and accepted for that. I personally think it is wrong for a parent to think disability, or autism, is a bad word. I think the disability community, much like race, do not identify with the cancer comparison in the sense of being ill, however, it is interesting to me, after being through a stage one cancer experience myself this year, that people with cancer will identify themselves as being "cancer survivors" in order to explain who they are by virtue of their experience with cancer. Going through cancer, as my mother and I can attest, indeed shifts something within you. The experience forms who you are. And I don't see the problem with that.

I want Adam to be proud of himself as he is. He is part of a family who shares very many of his traits --inward and outward -- yet he also appears different in the way he expresses himself and moves. Autism may be similar to the experience of being bi-racial or "blended," if you will. Autism is a part of all of us.

Yesterday, Adam sat through the entire movie, E.T. Watching with him made me either believe Steven Spielberg is really autistic, or that the man really gets it.
Usually, Adam can get into 30 minutes of a movie, and he's off doing something else. Yesterday, he would watch, then giggle, then roll around the couch, then snuggle with me -- enough antics to make many adults think that he couldn't have been really paying attention, but I could tell he was. There were also moments when he would repeat the lines. He would watch the screen and be still. Therapists tend to use the same stories over and over again to assess an autistic person's comprehension of a story. And yet, when Adam sees something new, or more complex than people thinks he will understand, he really gets the gist of things. This typed conversation I had with him yesterday illustrates this:

Me: "Adam, I really enjoyed watching the movie with you today.
Adam: i like toad.
Me: what was the alien's name?
Adam: et
Me: E.T. had lots of feeling and a very big heart. E.T. had lots of love for others.
Adam: Et was the guy yes
Me: E.T. could hardly speak. In a way, E.T. is like you. He understands but finds it hard to talk.
Adam: E.T. was question
Me: Do you think you and E.T. are similar?
Adam: E.T. was the want
Me: What is want?
Adam: E.T. was the want to speak.
Me: E.T. wanted to be able to communicate. What else did E.T. want?
Adam: et wanted to go away.
Me: Where did he want to go?
Adam: home.
Me: yes, we all want to be home and be with people who are like us.
Adam: i people."


Indeed he is people, a person. Adam is Adam and he is all of us.

A Note About Crying to Michael Savage

I was very disturbed and concerned last week, as most of our community was, when I heard of Michael Savage's remarks on radio. As you can read in yesterday's post below, he suggested that autistic people are faking it, that the kids are crying as a bad behaviour instead of recongizing what that behaviour might be communicating.

Today, I have an example of something Adam has written and how I must try and understand what he is trying to tell me. I can do so by watching him and I usually think I can understand, but also, because he can, we practice his typing. Of course, when autistic people are distressed, communication is more difficult. Nevertheless, I gently prod Adam to try and tell me what he means. For weeks now in the summer he has been typing "red jar." Because he's been using it over and over again, I was trying to learn its meaning. I found out today:

Me: Why are you crying?
Adam: I am crying read in red on red
Me: That is difficult for me to understand. I wonder if you can explain what red means when you write it?
Adam: red means to cry yes.
Me: What were you crying about?
Adam: in red jar
Me: So do jar and red mean to cry or be upset?
Adam: feel too hot.
Me: Oh yes! It is very hot and humid outside today. Were you very hot on our walk with Kiki?
Adam: yes
Me: Would you like anything to eat or drink before mommy takes you out?
Adam: is ready a party
Me: Mommy is taking you out for lunch.
Adam: to ears is eat.


So, I learned that all summer Adam's use of red jar means likely his feeling hot. The air is humid, so maybe he links that with the jar. I have to inquire more. Also, I liked the way he said "to ears is eat." I took that to mean (and the receiver must always acknowledge their own way of knowing and understanding meaning), it sounds like we're going to eat.

Savage said autistic kids are just brats. Imagine Adam being viewed, as he tries SO hard to communicate his needs and desires, being treated like a brat! I really think the brat is Michael Savage for accusing autistic children of this. He makes our lives more difficult.

Beyond Surviving The "Savage" Hurricane Season

It feels like we are in the eye of the storm. While I might say I hit a personal one with cancer earlier this year, at least that part is over and Adam and family are having the best summer on record. But we are really too close for comfort. As you can see from the images above that I took from Florida, tornados and hurricanes are close at hand.

Michael Savages out there or not, there is something about sustaining advocacy, and being able to rise above despicable remarks. It's like any other prejudice out there be it racism, anti-semitism and that continues to oppress others and segregate -- we know ignorant people will exist, that they do exist. We know someone has always wanted to get rid of Jewish people and we know facism still marches to its own drum long after Hitler's "reign" of terror. Yet, we must put the SAVAGES in the spotlight lest we ever forget how easily we can give over our own freedom and power. It is why groups exist to ensure that we never forget.

Today, ASAN and other organizations including The Autism Acceptance Project released Outrage over Michael Savage's Remarks Grow: ASA, UCP and The Arc and many others join the disability community's joint statement:

We, organizations representing people with disabilities, family members, professionals and other concerned citizens, are calling upon you to withdraw support for Talk Radio Networks in response to the outrageous comments by TRN personality Micahel Alan Weiner, also known as Michael Savage.

On July 16th, Weiner announced: "Now you want me to tell you my opinion on autism since I'm not talking about autism? A fraud, a racket...You know what autism is? I'll tell you what autism is. In 99 per cent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straigten up. Act like a man. Don't sit there crying and screaming, idiot."

These comments represent dangerous misinformation. The refusal by Talk Radio Networks to condemn the comments or undertake any steps in response to them, as well as Michael Savage's refusal to apologize, is absolutely unacceptable. The autism spectrum is a very real developmental disability affecting millions of Americans [and Canadians]. It includes a series of impairments in social interaction and communication, executive functioning, sensory processing, and motor skills. Adults and children on the autism spectrum often require substantial supports and services and education across the lifespan.

Comments like those on the Savage Nation do real damage to autistic people by increasing public ignorance and misinformation about autism, thereby putting at risk vital education supports and services. Contrary to the remarks by Mr. Weiner, there is no evidence whatsoever to suggest that autism is over-diagnosed -- in face, research suggests that there is substantial under-identification of the autism spectrum, resulting in lack of vitally needed services and education. In addition, these remarks revive outdated and damaging misconceptions about the source of autism, recalling the "refridgerator mother" myth in which parents were blamed for having autistic children.

Talk Radio Network's sponsors must consider whether or not to associate with the hateful and offensive comments spoken by Michael Weiner. Because TRN has taken no action, we urge you to communicate the need for Mr. Weiner's immediate removal by withdrawing sponsorship for TRN's programming. There are over 50 million people with disabilities in the United States representing approximately $200 billion disposable income. We represent a market that cannot be ignored. By disassociating your businesses from the ignorant and hateful remarks made this past week and taking practical steps to help educate the public about the true nature of the autism spectrum with other disabilities, we can move forward towards creating a world that will recognize the rights of all people to respect, dignity,support and inclusion.

Ari Ne'eman
President
The Autistic Self Advocacy Network
www.autisticadvocacy.org

While an advocating Adam and family enjoy a first real quite a summer, he has also enjoyed camp every day. It's not an autism camp -- just a camp he goes to with other kids...talk about social skills! Adam is the most popular kid of the juniors! Imagine that for a child who can barely speak. Imagine the children who are evolved enough to understand him.

All the kids want to be with him, and as a mom, I am stupefied in sort of a proud and delirious way. Adam arrives home and swaggers with confidence -- the kind I want to bottle up and give to him for the rest of his life. Have I contributed to that in any way? Or has Adam given me the joy and strength I am experiencing? One thing I know for sure is there is one message I want to give him -- life is too short to waste on people who don't care about you. I hope he can have that confidence which is the kind that can make one a strong self-advocate. I also want to bottle the essence of child-like acceptance and give it to every person he encounters throughout his school years. So, I am working towards that -- I am about to announce an major inclusion initiative we are undertaking with another agency here in Toronto.

While keeping you on edge for a little while longer, though, Adam came home this week with his first-ever award. He was given The Best Effort Award.
I tend to think those are the best awards. You can win easily, or win with tons of effort. The person who has put in the tons of effort is the one we ought to celebrate.

Adam also returns home with a printed piece of paper with his certificate that reads, "Adam is always smiling and laughing during the camp day. His attitude is so positive towards campers and staff members. He loves to go to arts and crafts so that he can show off his wonderful creative side, and make wonderful pieces of art!" And aside from this his swim instructor wrote, "Adam's confident and easy-going attitude has made him a pleasure to teach...Adam is a lively, happy swimmer in our swim class..."



Mr. Weiner's remarks, as many of you have said, indeed lived up to the Savage name. Savage is primitive -- lacking in evolved intellect and robust with an ignorance that suggests he has never met the Adam's of the world, our autistic children, who need our love and support. Yet, as you see Adam below learning how to build with his grandfather, autistic people are able people too. The savage storms swirl, and yet, here we are. Adam for one, is the gift who keeps on giving.

It's Up and Running Again

The Autism Acceptance Project website is back up and running.

The Autism Acceptance Project Website

Hi everyone,

Aside from working on a major project which will be announced, Adam and I have been having too much summer fun to write. However, I do wish to advise that our TAAProject website (www.taaproject.com) is temporarily and accidentally down. We don't know if we will be able to fix it quickly. Please be patient. We may have to rebuild it.

Fits and Starts

Yes, that's how I feel my recuperation has been. After a wonderful week in San Diego with Dad of Cameron, Autism Diva, One Dad's Opinion and Asperger Square 8, and the folks at University of San Diego, I came home, picked up Adam and we headed to a hot and sticky Florida to be awestruck by the possibility of Bertha hitting Miami. Then, we left. Adam has been having a terrific time at camp. He is the best swimmer of his class, and he is the favorite friend. So I hereby state that it's totally possible that kids can be "social" even without language!!

I am loving watching Adam get on the school bus, or strut back off after his first long days at camp (they used to be half days but now they go 9-5). He is totally happy. His friends also think that he's "very smart." Fancy that for a kid who can't respond typically.

So, while I got caught back in bed with threatening pneumonia again (which is why I don't write much), I want to share the "phenomena" with those out there who don't believe that non verbal autistic children are social or intelligent.

I am catching it all too -- on tape. And once I can figure out how to get more gigabites on my computer, I'll be mak'in more movies.

Way to go Adam! You make your mama proud!

Despicable

To whomever wrote to Adam on his blog, you are the reason why I chose to privatize it. I thought that so far, everyone has been so kind to him, but I was waiting for the day that someone like you would show up...sad but true.

How dare you call my son's words "gibberish" and if I ever find out who you are, I will hunt you down. And yet, cowardice hides behind the veil of anonymity -- so should I waste my effort or shine a spotlight on you -- no better than the dirty, scurrying cockroach? As such, you are a coward to pick on a little boy's words.

Such comments from adults to children are NOT acceptable, and it such doubt of autistic individuals that confront them every day. It is not fair to children like Adam who work so incredibly hard to communicate.

If you have something to say to me, I am fully armed to take it. He, however, is not. An autistic child is still a child. No more, no less.

For our loyal and supportive readers, be not discouraged. I have to do what I have to do as Adam's mother. However, we can invite people who choose to email us and reveal something of themselves, to read his wonderful blog. The whole point of course, is to share and celebrate our successes with one another -- to touch and encourage each other. In the end, to value what we all do offer. Who knows, it may go public again once my rage dissipates.