I've been immersed in the world of autism as much as anyone can be who isn't autistic (although there are many "non-typical" similarities I and my husband both believe we share with my daughter).
When my daughter was first displaying autistic traits when she was a year and a half, until we received her diagnosis, my husband and I had many conversations of our belief that she was actually more evolved than we. The way she could implicitly pick up knowledge. The quickness of her mind in so many ways. She could count to 50 and knew all the alphabet and their sounds before a year old! She picked up so much knowledge it was astounding.
When our daughter started to lose her language, at around 1 ½ - 2, and would get frustrated by not being able to "find" a word that we knew she knew, it scared us because we were afraid that some disintegrative issue was happening. It wasn't the "right path" of development. Children didn't develop this way. People began noticing and commenting on Alana's differences. She needed assessments and special help, we were urged to get testing. This, coupled with our own fears that grew the more we read and the more we compared her to "typical" kids of our friends, compelled us to our school where she was tested and diagnosed "autistic." It compelled us to neurologists where she was tested and diagnosed "autistic." We signed up on state lists to get help and assistance. Her IQ was a 35! Quite a scary situation for parents.
I began reading and joining internet groups and feeling the desperate need to find a cure. Searching for answers. Examining her. Getting her therapy.
My husband and I had, from the beginning, determined that we would not "medicalize" her childhood. We wanted to maintain her "uniqueness" that we adored. But I was getting sucked in and panicky, and Alana was getting more angry and aggressive because she could not access her language. She never looked at us in the eyes, and that frightened me.
All the sources I had access to really indicated that this was the crucial time to act. Alana would be lost without early intervention. She needed to be "cured."
Alana was also "bumping into" society. I had to "explain" her differences to a public that expected certain behavior from children. People yelled at us for things like Alana playing with their keys while we were standing in line behind them. Alana would just walk on kids at play groups if they were in her pathway, and I was frightened for my beautiful daughter; someday she would be hurt by one of these people who were angry with her differentness.
Getting more and more into the internet’s autism organizations and searching for clues and cures, I nearly forgot my pledge to appreciate her uniqueness and not medicalize her life. To our credit, we did balk at any treatment that seemed too invasive. We tried the GFCF diet, and yet told her teachers that if it was a kid’s birthday, they should let her eat cake!
I tried a lot of herbals and vitamins and supplements, but anything that she didn't like, I never made her take. Today she is only taking multi-vitamins, acidophilus, fish oil and melatonin (because she has had many sleepless nights). I only give her things that I think are beneficial for all of us.
Further, now that Alana has worked her way through Wisconsin's wait list, and is participating in ABA, and after just having read Michelle Dawson's stance on ABA, and writing a blog on autism power and advocating for autism power, and advocating for parents to have the resources for ABA, I have to address this issue: is ABA unethical? Am I trying to "change" Alana?
The answer is much more complex than a simple yes and no.
After going through panic and trepidation regarding Alana having autism, I finally found some websites of adults with autism. They reaffirmed my and my husband’s first inclination (he never worried the way I did, however, because he never really got into the online autism world), that Alana doesn't need to be "cured." That over medicalizing a child's life is horrifying and degrading. That people with autism should be appreciated for their uniqueness and that the whole person must be accepted.
Now, with that being said, I have to defend the stance of the parents as well. I know the fear of raising a child who is extremely intelligent, but who will put things into their mouth that could hurt them, or who would walk into on coming traffic because they are so engrossed in whatever is engaging them. I know the anguish of worrying about your child being attacked for being different. But most importantly, I knew I had to do something about Alana's frustration at not being able to access "our" language. It wasn't that she didn't want to communicate. On the contrary, I could see her getting very frustrated when she wanted something and couldn't tell me what it was!
ABA, for all its horrible history, enabled Alana to communicate her needs. Will it reshape who she is? Not at all! I would never tolerate that. Alana loves her ABA therapists (from WEAP). She enjoys her therapy sessions. They make it fun for her.
I think the real danger here, the point that Michelle Dawson and others are trying to make about autism, which I believe is a valid commentary about our society in general, is the danger inherent in the rush to push our children into conforming to a narrow definition of what is acceptable. When parents and practioners deviate from the understandable concerns regarding safety issues and the child’s inability to communicate, and enters the realm of “curing” the child from his or her uniqueness, that, I believe is where they cross the line.
When Oprah did her show recently on autism, I was very excited for the national attention autism might receive. After the show I was disappointed. How sad, I thought, that Oprah didn't have anyone with autism on to speak for themselves!
Like all social movements, the striving for rights for autism or power for autism will only succeed when the people we are fighting for participate in the movement. Fully.
Any organization that is working for goals related to autism should seek out people with autism to help define those goals. Further, all parents who are looking into treatment for their children with autism should seek out adults with autism to get their perspective on their plans.
I know from a personal stand point, when I finally accessed the websites of the autists themselves it was revelatory, it was confirming and it was important. I want to validate my daughter’s unique place in this world and use therapy to provide her with the tools to communicate, not crush her individuality. That is something towards which good parents, parents of all children should strive.
Whether autism is the result of genetics, evolution, environment toxicity, vaccinations or a combination of the above, whatever causes “it” doesn’t negate the right of those with “it” to exist, authentically. The right to self determination still applies, and our children’s uniqueness must always be appreciated and never quashed in order to “fit in.” Our treatments, whether they be ABA or biomedical, must always have the consideration that our children are individuals, with certain unalienable rights.
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I am using ABA to try and "change" my son. Before beginning ABA intervention my son could only scream and tantrum as communication tools. Now he can communicate verbally in words and word groups. We also have been able to reduce self injurious behavior such as severe biting and head banging. Conor, by means of ABA was toilet trained long before starting school. These are all "changes" brought about by use of ABA.
Ms Dawson has intervented before courts and legislative groups to argue against ABA treatment for autistic children of which she has none herself. She opposes parents efforts to improve the lives of their autistic children by means of the only, to date, evidence based effective intervention.
It is unfortunate that you have been influenced by Ms Dawson's views. You might change your perspective on her approach if she comes to Wisconsin in an effort to keep children in your state from receiving effective treatment. Your attempts to obtain treatment for autism are in direct contradiction with Ms Dawson's anti-treatment views and activities.
Her views are not the views of ALL high functioning autistic persons. A gentleman named Jason Oldford has served with distinction as a member of our provincial Autism Society board of directors here in New Brunswick for many years. Jason has Aspergers and approached our group to offer his insights about autism. He was not excluded as Ms Dason often claims occurs with autism societies. He was welcomed and his organizational skills were invaluable to us for several years. Jason ALSO appeared before the Canadian Senate committe studying autism funding in Canada that Ms Dawson appeared before. Jason has been supportive of efforts to treat autism including use of ABA as the only to date evidence based effective autism intervention.
I think you are missing the point of my manifesto.
I think as parents of children with autism, it makes sense to listen to the voices of adults with autism to try to get an understanding of something that for many of us seems very hard to understand: what it is like to live in the world of autism.
From conversations I've had with adult autistics, and by reading the articles written by adults with autism, I've gotten a sense of the incredible pain that has resulted from the words that are used to describe them: a "plague," a "nightmare," a horrible condition from which they must be "cured."
Now, I'm not arguing that there is no trauma associated with autism. Indeed, parents can testify to the very painful side effects experienced by many of their children. Biting and head banging are indeed severe behavioral issues that for safety purposes must be addressed. Also, acquiring many of the self-help skills that kids with autism can obtain through ABA has much efficacy. However, as parents, it is important for us to have a contextual framework for understanding the opinions of adults with autism regarding ABA. Many adults with autism experienced horrible abuse at the hands of "therapists" who inflicted hits, shocks, restraints and a host of other "treatments" that these adults of course reject and from which they recoil.
Many of these adults have pledged "never again" will this pain be inflicted on others.
Further, these adults like who they are, and even your own son will never be "cured" of being autism. Children with autism that are mainstreamed are still autistic, they just have acquired the skills that enable them to cope with our society.
That is the bridge that I am trying to build: the acknowledgement of the pain inflicted on autistic individuals which Ms. Dawson so eloquently expresses, and the goals of parents like you who want to give their child coping mechanisms and make their life free from the painful side effects from autism.
These two stances are not mutually exclusive.
By arguing against ABA, perhaps Ms. Dawson has shed some light on the abusive past that is indeed part of ABA's history. By raising the idea of the right to exist with autism, perhaps our children can be accepted with their differences intact, and we as parents can take pride in their uniqueness.
At the same time, parents can advocate for appropriate interventions for their children, so that skills like toileting can be acquired, and dangers like head banging and biting can be eliminated or reduced.
But it should be done in a way that is respectful to the right of an individual to maintain a sense of self and uniqueness.
I would welcome Ms. Dawson to Wisconsin. I would invite her input into what appropriate education for children with autism should consist of, and I would listen to her opinion, just as I would listen to the voice of a mother with a son who couldn't toilet himself or who banged his head has prior to successful intervention through ABA.
It is only through listening to each other, as your group wonderfully exemplifies through your relationship with board member Jason Oldford, that we will progressively make the world a better place for our children: the desire that is shared by you and Ms. Dawson.
I won't argue with you. I am much more familiar with Ms Dawson's "work" than you are and I know what her views are. She is not interested in listening to anyone who disagrees with her views on autism.
She has actively intervened in court and legislative proceedings in Canada in an effort to prevent parents from obtaining government backed treatment for their autistic children and she openly brags about it on the internet.
If you know anything about ABA as it is actually practiced today then you know too that Ms Dawson promotes grossly distorted and inaccurate views of ABA and she also distorts the body of evidence that supports its effectiveness as an autism treatment and educational intervention.
You can cozy up to her if you wish. Canadian parents of autistic children seeking to treatment for our children don't have that luxury. By all means invite her to Wisconsin. Ask her to address the legislators that you are trying to persuade in Wisconsin. Go ahead, fill your boots.
I have and will continue to work with autistic persons who don't feel that efforts to help our own children are somehow an attack on them. There are many autistic persons who do NOT share Ms Dawson's views. Some of them even try to help parents seeking to treat and educate our children.
I don't see this as arguing, but as having a dialogue about something that impacts both of our lives.
I can understand your frustration trying to obtain services for your daughter. In Wisconsin we have a long wait list for people who are looking for services.
Additionally, I am very familiar with ABA, we employ it with my daughter; she is going through therapy as we speak.
The very point of my article is to attempt to acknowledge the pain of adults with autism dealing with their rejection by society, and to reconcile their position with the realities that parents face. I think that there is a common interest in doing this from both sides of this issue.
I know that ABA uses techniques that really help kids acquire new skills. My daughter's program is has helped her acquire communication skills that she has been unable to acquire without it. However, I am completely resistant to using ABA to change behavior in her that is not dangerous just to make her look more “normal.”
In the past, ABA has been applied abusively. And many practitioners did use ABA to teach autistic people to suppress these idiosyncrasies so they fit in better with the world. This is where I definitely draw the line. I will allow my child to learn communication skills and keep her from endangering herself, and help her to be less vulnerable to abuse from others via ABA, but I will not allow behaviors that are not harmful in and of themselves to be addressed as part of the program. Most good ABA programs no longer do this precisely as a result of being challenged by people with autism.
By recognizing that the inappropriate application of ABA and some of the language used to talk about autism has been harmful, we can open a dialogue with adults with autism who have been traumatized by a society that doesn't accept them, and all work together for the good of our children. If we do not do this, we will only further alienate people who could provide insights into our own children.
We love our children with autism, and seek to change the behavior that is damaging, and give them the skills that will help them to navigate this world. This is something which we can all agree.
Good post!
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