From the Autism World

3/28/2010     I learned several things today.  One is that there is a group of parents of kids with autism who have preconceived notions about their kids and their lives that, no matter how rational and reasonable one tries to be, believe they have been handed the worst curse -- a child with autism.  In some cases, two kids.  In others, three. 

These are parents who detest the idea that their children may have something to offer, who refuse to listen to reason about their children's potential or gifts, and whose only hold-out is a miracle "cure."  I learned that these people think it's okay to speak of defeating the essence of their children's being -- their autism -- in front of those children as though their children will be grateful for their parents concern.  As a parent of four plus, I am pretty familiar with the phenomenon of "developing self-esteem."  If you want to develop self-esteem in your children, you don't tell your friends and family in front of your kid how hard the kid has made your life, how you wish s/he did x or didn't do y over and over and over, how you hope for a cure or way to defeat that child's condition.  You don't convey the message that "there is something so wrong with you that you must be changed to fit my perception of what my child should be like."

These parents get angry at the mere suggestion that there may be something RIGHT with their kids.  They don't want to hear about quality of life issues, how segregation in the early years pretty much guarantees segregation in the later years, how failing to teach the social and communication skills their children need through a research-based process of peer modeling will doom their children to adults with impoverished social lives, how focusing on only the skills that help them as parents will add to autisms but incorporating that instruction into natural routines and rhythms will allow their children to be more independent.  No, these are parents who know it all because they talk to each other.  They believe in human perfection and are convinced that God does make mistakes ... a lot of them, the most insidious of which comes in the form of autism and related conditions.

I also learned that when you try to reach out to these parents, when you dare suggest to them how to support or accommodate their children's neurological differences, they liken autism to cancer and supports/accommodations to chemotherapy.  Since when has a "treatment" for autism cured autism?  Have you noticed, parents to whom this is addressed, that your kids STILL have autism? 

Over the years, I have seen time and time again that the kids with autism who are most successful are  the ones 1) whose parents accept them and love them, including their autism; 2) whose parents, school teams, and others wrap around them and their parents to provide respite, love, and support; and 3) who receive a real education that challenges them but also teaches them how to self-accommodate so that they can negotiate a neuro-typical world even when challenged by it.  Kathy Snow's Disability is Natural applies to ALL kinds of challenges parents face... and life with kids is always challenging.  Life with a nonverbal kids screaming in agony from an ulcerated esophagus or pounding their head in frustration because there's no way to tell the world what you're thinking or really need ... that has to be the greatest challenge of all.  So why don't these parents want to know some ways that can really help?

If you're reading this and may be one of these parents, check out the Autism Acceptance Project, the Autism National Committee,  TASH:  Equity, Opportunity, and Inclusion for All, the Autism Spectrum Differences Institute of New England, Inc., and some of the other organizations that believe that QUALITY OF LIFE counts more than anything else ... even if you are also continuing to look for roses in France instead of tulips in Holland.