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Can High Expectations Sabotage a Parent's Relationship with Their Autistic Child?

By June 7, 2006

A New York Times Op-Ed piece by Cammie McGovern came out yesterday. The article, called Autism's Parent Trap, suggests that stories about children "fully recovered" from autism are forcing parents into unreasonably expectations for their children on the spectrum. According to McGovern, the recent murder of an autistic teen was precipitated, in part, by a parent's despair over the reality that all her efforts had not cured her child.

In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures....I don't mean to sound pessimistic about the prospects for autistic children. On the contrary, I see greater optimism in delivering a more realistic message to families: Children are not cured, but they do get better.

If nothing else, stories of "recovery" managed by parents who have given up everything for their child can lead to overwhelming guilt. "If only we had moved to X place nearer to Dr. Y... or tried yet another therapy... or mortgaged our home for that special school... it might have made all the difference!"

In my article These Top Ten Tips for Handling Guilt I address some of the guilt-inspiring messages that parents handle every day. But how do you handle the pressure of the media, the internet and well-meaning friends who have yet another "must try" therapy, "must read" book, or "must invest" resource?

June 9, 2006 at 11:17 am
(1) Cydanie's Mom says:

I do alot of self-talk, and try to focus on the positives, not the negatives. The negatives are still out there, and I am well aware of them, but I kind of think of them as shadows that I battle everyday to keep at bay with the light from my “lantern of positive thoughts.” I have a couple of things, in particular, that help me when the “guilties” start to crowd out my “glass is half full” thinking. When I start to get distracted by things I think I wish I’d done in the past, I try to remember a quote by Maya Angelou (which I am paraphrasing here): “I did what I knew how to do. Now that I know better, I do better.” And it’s true – I did everything I could for Cydanie when she was younger, and now that different therapies are becoming available that we didn’t implement 12 years ago when she was at an optimum age to get the most benefit from them – well, it doesn’t mean I wouldn’t have done them, given the chance. I did what I knew how to do at the time. The other thing I try to keep in mind, when I start to feel guilty about not giving up everything to get her 24/7 ABA or to pay tuition to fancy private autism-only schools or tutoring/speech therapy beyond what our school district offers and our insurance will pay for is that, I have two other children who deserve as much of a normal childhood as they can have when they have an older sister who happens to be autistic. That means their share of family resources in both time and money – I can’t sacrifice their health and well-being to gamble on something that may or may not “cure” (or simply make a difference to) Cydanie. Any endeavors we undertake as a family to assist Cyd’s development have to be weighed against their impact on the family as a whole – not just the impact on Cydanie. It remains a somewhat cruel fact of life that one cannot have one’s cake, and yet eat it, too. And when I am particularly feeling down, I remember what my dear grandma used to say: “This, too, shall pass. Things may get better, or they may get worse, but they won’t stay the same.” This gets me out of my “wallowing in self pity and/or guilt” mode and gets me focusing on the future and what it might bring – good or bad.

June 9, 2006 at 2:31 pm
(2) Dawn Roberts says:

I fully endorse the theme of the article. I strongly believe that the each child is born on some spot on that spectrum that is fixed. One can make the very best of that child’s potential but he/she is not going to go from being moderately autistic to Asppergers. This is the myth of recovery that is frustrating too many parents. And, as helpful as much of the literature out there is, false hopes lead to financial ruin, dashed dreams and despair when the targeted goal keeps slipping away….

June 23, 2006 at 11:39 am
(3) Kama says:

On the other hand, without stories of recovery, there would be no reason to try ANYTHING, not even the standard teaching intervention that have “so called” been scientifically proven. Stories of recovery give hope and that all they do. People just have to learn to manage that hope and have realistic expectations. The death of the little girl should not be blamed on story of recovery. It should be put squarely on a system that gives parents little support. Inadequate support put all the burden on parents. This everyone for themselves culture is the real cause of despair

August 19, 2006 at 7:19 am
(4) connie says:

You mentioned that there has been set an “impossibly high bar” leaving the PARENTS of a half million children feeling like failures. I DO UNDERSTAND THAT THIS IS A SERIUOS PROBLEM(MY 6 YEAR OLD SON WAS DIAGNOSED”AUTISTIC” AT 18 MONTHS.) More importantly though, what about these precious children????? They are the individuals that are being pushed, prodded, poked, screened , tested, displayed, on display, on very limiting diets, under constant scrutiny by parents, caregivers and educational professionals.They are expected to perform in a way that is not natural for them and when they dont meet expectations they are pushed even harder. It seems to be perfectly acceptable to talk about an autistic person, discuss their lives, their health and educational issues all the while doing this right in front of them and acting as if they are unable to understand anything. WRONG ANSWER!!!! Autisitc individuals are the most sensitive and loving individuals that you will ever meet. This space is limited so I will close here. In closing I would like to ask that every person who is fortunate enough to have the privillage of taking care of,teaching or knowing intimately an autistic individual, that you consider what the other is feeling and dont assume anything. Treat them as you would want to be treated. They are very special beings, and they are here serving us. They are being treated as failures and yet it is the rest of us that are failing them.

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