Friday, 09 April 2010
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Is there Prejudice Against Those with Autism?
As I sat in my dining room last week after my IFSP meeting, I was numb with disbelief. I could not believe that treating my daughter, a toddler, who has autism, was not considered important to my state service coordinator. Why does no one want to help her turn this disorder around? Is she so far gone? Is she a lost cause? I don't think so, but maybe she is.If Ava has any other disease or disorder - diabetes for example, she would be treated with compassion and a solid medical plan of action. But autism carries baggage. There is no crystal ball, there is no cure, there is no blood test to make it seem real.I remember the AIDS crisis in it's infancy. Two good friends of mine contracted the HIVvirus in he mid 1980s and died within a year of diagnosis. It was a horrible, painful death for both of them with so much suffering was endured. What was most disturbing, was that people were uneducated about AIDS then. I remember nurses refusing to come into my friends' rooms. I remember doctors not wanting to treat them. I remember people were afraid and their illnesses were "covered up". I think both of them would have survived if they were diagnosed today - given the advancement in AIDS medications and care. But both of them died too soon. In fact they would be alive today if the advances and acceptance came sooner.
Is autism the same? Does it have a stigma? It makes the government afraid or my daughter would be given the best treatment available without questioning me as if I was a nut case begging for the unattainable. It has a stigma in society -- no one knows what autism is. No one is hard-pressed for a cure or research unless they have a child with autism. And insurance companies are afraid of incurring the costs associated with autism. Families are afraid too -- some families stick their heads in the sand and hope autism just goes away.
A mom of an autistic first grader advised me NOT to disclose Ava's autism to any stranger. She said, "say she has some issues or needs some speech." I chose not to be in the closet with Ava's autism for a few reasons. I want her to be accepted and acceptance starts with awareness. I want people to know that autism affects many different types of children - even as young as 2. I want parents and pediatricians to be aware and on the lookout for import signs and behaviors. I want autism to be treated medically with affordable, reliable treatment. So keeping Ava's diagnosis a secret is not a position I wish to take.
However, I do not want autism to hold Ava back. I want her to be challenged and I want her to think of herself as a perfectly typical child, teenager and adult. I want her to be aware of others with disabilities and feel compassion and look at typical kids as peers as well. I know putting a label on her may discourage her -- but way back when - dyslexia was considered a stigma. Now it is treatable and not considered an unconquerable disorder.
I hope one day autism is understood. I hope one day autism is not a word to be afraid of. I hope one day autism will be treatable. But until then, I will consider autism a word that helps me understand my daughter and the way she thinks, behaves and learns. And the rest of you are going to have to get used to it.
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About the Author
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- From: allaboutava
- Name: allaboutava
- About Me: I have the honor of being the mother to a beautiful little girl. I did not think motherhood would be a possibility, but thanks to the perseverance of my husband and a few medical professionals, Ava was born. I've tried my best to take care of her, help her learn and be there for her every need. She is a special needs child who was diagnosed with Autism Spectrum Disorder in October, 2009. She has a long road ahead of her -- and I will be there every step of the way.
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Comments (8)
By all means, challenge her. I was never diagnosed as a child. Autism didn't exist in the lexicon of 1958-70. It has nonetheless been real, and it's been left to me to make my own breaks. I am living comfortably, but there have been some rather hairy periods, most stemming from the ignorance of others.
You will need to educate and resist the ignorant ones.I certainly don't want to tell you how to raise your child, but I would like to note that there is a difference between being open about something and being forward about something. I think if your goal is that Ava (which is a very pretty name by the way) be accepted for who she is, not rejected for what she has, forwardness is a bad policy (except pediatricians, which is different).
As far as available treatments, it's unfortunate, but not enough is known about autism to really treat it, and right now cancer, AIDS, etc. are "sexier" and therefore get more grant money. I think as long as the cause is unknown, there will be a stigma attached to Autism, which then creates a vicious cycle.
That all said, I hope this is some consolation: I know for a fact that there are several (at least two or three) programs going on at the University of Michigan researching treatment options for Asperger's.
What you are describing is an apathy or reluctance to commit resources because they are not confident it will do any good. That's the thing about autism. No one - least of all people in your school - knows how much better any particular kid will get. When a kid breaks both legs in an accident, you KNOW what the result of physical therapy will be. When another one gets sick, you KNOW what the antibiotics will do. So there's no hesitation. With autism, the therapies are long and drawn out, and it's hard to know what they will do, if anything.
That is very different from prejudice.
I'm not suggesting there is no hope. Rather, I am pointing out that the progress with kids on the spectrum is slower and harder to see than most conditions that are remediated in school kids. In addition, people hear "there is no cure," and they take that to mean, "all therapies and treatments are a waste of money."
John Elder Robison
Be open, by all means, turn your kid into a pariah.
What a beautiful story!
Many people are uncomfortable with autistic/Asperger's children, but never let that bother you.
You can believe that if there were a pharmaceutical pill for autism, there would be financial aid, insurance, and state support as an option. But I feel that is not really what you want in your hearts deepest desire.
In my experience, autism is conquerable! I work with families in the Los Angeles area and we're getting great results reversing symptoms without using western medical techniques .
Set your expectations high and never be afraid to fail - don't care what others think. Use autism as a vehicle for propelling Ava forward. Remember, it is our weaknesses that become our strengths.
Jimmy
Autism is very different from AIDS, Autism is NOT an illness.
Autism may not be curable but it is treatable and with the right support debilitated children can grow into competent even powerful adults - look at Temple Grandin and Donna Williams. Who cares what the world amy think what counts is how your child feels about herself - society is generally wrong ignore it!
I am sorry that you are facing a hurdle right now with helping your daughter get treatment for her autism. You are going to have to be ready to fight for your daughter until she is ready and able to fight for herself. Like some of the others have said, treatment of autism does not come with guaranteed success so it is hard to get insurance companies, service coordinators to sign on to a treatment. Keep fighting for your little girl and don't ever give up.
Have you tried contacting the Department of Mental Health in your area? If they take on your daughter, they will advocate for her to get the care she deserves. They helped my family and I out alot. Because of the DMH, I was able to get into an alternative school that met my mental health needs, I was able to see a therapist and psychiatrist without being refused by my insurance company. They really are wonderful.