Susan's Blog

Saturday, November 12, 2005

Autism – Not a Cause for Pity

The problem with many of those who insist that autism is something that must be and can be cured is the way it changes your perspective about your child. The child can easily then become a set of problems to the parent, above all else. This is natural in the process of understanding something as huge as autism, but it is not the end of the process; seeing the difficulties of being atypically neurological is only the beginning. Understanding autism is a way of understanding the child you have; it should not be the will to change the child, the drive to make him “normal.” Helping ones child is one thing, and a good thing. Being miserable over who your child is, being filled with shame over his eccentricities, his stereotypical behavior, his self-stimming — this can be avoided. But viewing the autism as simply a negative can only lead you to be miserable about parenting this child. The “must eradicate” attitude drives parents to be nothing but nutritionists, behaviorists, and therapists, for their children. These parents, however motivated by doing their children good, end up spending most of their parenting time trying to subjugate aspects of their children.

I am not naive. I have been there. I understand how difficult autism can be, particularly when it is manifested by a sensory overload that contributes to aggressive behavior, screaming, throwing things, etc. I know how painful it is to be a mother whose child cannot express himself the way you understand expression. I have lived with my son’s autism for just about 16 years, and I am just beginning to understand how much I did not understand.

How simple it is, really.

The answer is to try to understand him, the child, the person. To try to get inside his head, instead of forcing him to answer to yours. To give him the tools for communication, such as speech therapy, picture exchange systems (PECS), reading lessons, sensory integration therapy, etc., and then praising his progress. Most therapies, even the biomedical, work towards easing difficulties that arise from autism. These therapies help him get his words out, and make some meaning of the world around him. But if these therapies are administered with the intent to squeeze out the autism, to pound it out of the child, then I believe you will only encounter unhappiness with your child. I have encountered this with so many autism parents: the sweating over the progress your child did NOT make in a given IEP period; getting so anxious that your child notices it and falls apart; the refusal to understand that there is different neurological wiring at the heart of it that must be acknowledged. You get what you get and you don’t get upset, as my 7 year old says. Your child perceives the world differently and it is your job to accept that and to love him as he is first, and then to help him acquire skills to live successfully in the world.

Autistic children are thought to be almost creatures by some parents and many professionals (unwittingly); collections of behaviors or chemical imbalances that must be corrected. The underlying message, when you believe this, is that you are not good enough as you are. But autistic children have feelings, are sensitive to others’ feelings, and maybe even moreso than NT (neurotypical) children, because they have their own kind of focus. Imagine not being able to blot out all the sensory information around you. You might end up perceiving more than the average NT person; in fact, it is quite possible that the sky’s the limit in what you process because you process so much.

The time has come to stop pitying and mourning for the autistic child, and instead, to tune into him and figure out what he is seeing. What he is enjoying. It may not be something you can relate to; that doesn’t mean it has to be channelled into something else. Maybe he sees that string wiggling in the lightbeams as something incredibly beautiful, more beautiful than you can ever imagine. Why not assume the best? He is your own child. If he seems happy, maybe he is. The unhappiness comes when he intersects with a world that pressures him always to be different, or when he cannot let his vision out. Acceptance and communication. We need more of it in this difficult world.


I agree that sensory integration is a helpful therapy and have seen it help autistic kids countless times.

— added by Dr. Steve Parcell, ND on Saturday, November 12, 2005 at 11:54 pm

What a lovely description of a good parent, Susan, and I think it applies whether or not a child is autistic: a parent’s first task is to understand how the child perceives the world, and when understanding fails, to assume the best.

I would also add that it’s important to assume the best about a child’s future, not just his present activity or state of mind. Our society has many negative stereotypes about autistic adults, and because of this, parents often spend so much time worrying about possible future problems that they find it difficult to enjoy their child as he is.

For example, in your article about teaching your son to cook, you wrote that your family’s breakfast, instead of a moment to enjoy together, had become a moment to worry that he would never be able to live independently if he could not cook.

But where did this worry come from? Most of the men in our society have no idea how to cook because of our cultural attitude that it’s women’s work. Bachelors who eat cold leftover pizza for breakfast in their apartment are not just a joke — they really do exist in large numbers. If you had a non-autistic teenage son who left home without knowing how to cook, you probably wouldn’t think twice about it.

Assume the best. Put aside your worries. Enjoy breakfast with your son. If he can’t cook, it’s not the end of the world.

— added by Bonnie Ventura on Sunday, November 13, 2005 at 10:11 am

Great post Susan.

— added by Kev on Monday, November 14, 2005 at 4:24 am