Marti Leimbach - author of Daniel Isn't Talking, Dying Young, Sun Dial Street, Love and Houses, Falling Backwards

Books

	The Man from Saigon
	Daniel Isn't Talking
	Dying Young
	Sun Dial Street
	Love And Houses
	Falling Backwards

Autism "parent trap" leads to murder? Oh please.

When I read Cammie McGovern’s Op-Ed piece in the New York Times, Autism’s Parent Trap, I was so cross I wrote to the editor. I think that is the only time I have ever written a letter to the New York Times, but as far as I am aware it wasn’t printed.

For those of you who are not familiar with Cammie McGovern’s piece, have a look at this link and then come back and see why I was so upset by it. http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?emc=eta1

The NYT does not print responses to Op-Ed pieces except as letters to the editor, and I guess that there is a lot more happening in the world than this little argument that Cammie and I might have, so oh well. But I thought I’d put it in my blog anyway, just so those of you who have written to me to show me the Op-Ed piece (and some who have asked why I did not respond to it!) can see what I would have liked to say in response. _____________________________________________________

Like Cammie McGovern, I am saddened by the deaths of Ryan Davies, Katherine McCarron, and Christopher DeGroot, all of whom were autistic, and whose parents were either the confessed killers, or in DeGroot’s case, the prime suspects involved in the murders. Like Ms. McGovern, I am sure that such incidents are due, in part, to the emotional and physical exhaustion reached by the parents of children with serious disabilities, as well as our inability at present to extend sufficient support to those families who need it most.

I cannot imagine what thoughts go through the minds of a parent who kills his or her child, nor the despair that eventually leads a parent to such a dreadful act. However, Ms. McGovern has written that the reason may be due to what she describes as a “disconnect” between what is promised autism “bibles of hope”, in which it is reported that some children can recover from autism, and the reality of the condition, which offers no real chance of recovery at all. She ends her piece with the suggestion that the false promise arrived at by reading such “bibles of hope”, and parents exhaustive attempts to help their children achieve the promised results, were the reason for these murders. She writes, “For three children, the disconnect between parental determination and limited progress may have been lethal.”

I would like to point out that there is no evidence for Ms. McGovern’s statement, and in the case of Katherine’s mother, Dr. McCarron, it is impossible to believe that years of slaving away under the false hope of a cure caused her to murder her daughter – the child was only three years old. Ryan Davies was autistic, but he also had the chromosome disorder, Fragile X Syndrome, which meant his mother would have been unlikely to believe he was going to “recover” from his condition. The parents of 19-year old Christopher DeGroot were unlikely to have received a great deal of hope for their son’s “recovery” as older children are not usually believed to benefit as much by intervention as very young children.

I cannot understand why, then, Ms. McGovern argues that it was the dashed hopes of the parents that triggered the murders of these three children (and we do not yet know whether DeGroot was murdered), and that unrealistic expectations may have accounted for these crimes. If there is a “disconnect” it is in her argument. The sense of hopelessness that visits parents who watch their children with special needs fail to develop, knowing that one day they will not be there to protect their children from harm, cannot be underestimated. Furthermore, I don’t think it is possible to read the literature on autism without being made aware that autism is considered a lifelong condition. For every encouraging word about the possibilities ahead for a child with autism, there seems to be a thousand discouraging ones.

The truth is that many autistic children make significant, lifelong improvements if given early treatment. Autism is not a stagnant, unmovable condition, but a disability that seems to respond well to early diagnosis and intervention. There are, indeed, some remarkable stories of improvement and those stories are very real.

My own son, diagnosed six years ago at the age of three, could not speak at all, or play; he did not appear to understand a single word that was said to him, or even communicate by pointing. Today he has full language, which he uses flexibly and naturally as any child might; h goes to a mainstream school, has friends and hobbies, and places he wants to go. I was never promised he would “recover” or that he would be “cured”. I sought help and read testimonies of parents who had seen significant improvements in their children. I believed that my son had, at the very least, the potential to improve greatly – and he did. When I returned to my work as a novelist, I wrote the novel, Daniel Isn’t Talking, based in part on the first year or so after my son’s diagnosis, which reflects the kind of real-life progress made by my son. Is this one of the “bibles of hope” to which Ms. Mcgovern refers, believing them to be unhelpful or even dangerous?

Surely, it is as important to know that some children do progress dramatically as it is to be told that some children do not. It is critical that we study what may have been the reasons for these different outcomes, and I am confident that one day we will have more answers on that front. I sometimes review the improvement my son has made so far in order to feel optimistic about his future. After all, he is progressing a great deal and I have no crystal ball -- is there something wrong with this kind of hope?

The problem is not that false promises are made to parents like me who have children with autism, but that no promises are made, and in many parts of the country no real help is given. My son was lucky because his parents could afford intervention and did not have to wait to receive it. My son was lucky because there was a world wide web full of information and other parents who were willing to help advise me. It is harder for many other parents; harder for their children, and this should not be the case. Parents do not need their child to “recover” from autism in order to rejoice in them, and parents do not murder because they feel disappointed by a treatment program or something they read in a book.

Wednesday, June 14, 2006 | 18:09:05

Comment by Angel

Amen!

Friday, June 16, 2006 | 22:07:27

Comment by Karen

I whole heartedly agree with you as when my son was diagnosed I read everything I could get my hands on as I needed to learn so that I could help my son (and perhaps myself too). I read many books and then your book too this year (I even e mailed you and you replied - thank you!) . I loved your book so much as it was so real and so honest that I wasn't surprised to hear you had an autistic son as the book was so like my own situation. Books inspire me, they don't give me false hope and I love my son so much, I'm not disappointed as I couldn't love him anymore than I do, he is the only way I know him and the way I made him too. His actions and sounds may be different but I love him, each and every part of him.

Monday, June 19, 2006 | 12:36:41

Comment by Marti

Thank you Karen for writing, and for being so positive! You know, this is the thing: people seem so worried that we are not "accepting" our children or loving our children as they are, and yet we are just desperately trying to do our best for them because we so love them! If by accepting our children are autistic we accept all the limitations that implies, then we misunderstand the capacity our children have to learn. Not even the "experts" know what any given autistic child is capable of, and of course every child is different. We have to test these waters all the time. A long time ago I would never have thought Nicholas would be interested in the World Cup. He was just NOT a sporty child (and still isn't, really). But this year he is really into it, just like every other boy in his class. He is also a little TOO into his geography right now. If you mention the country, France, he will reel off all the other countries where they speak French, for example. Now, that is not really very normal, is it? But do I mind? No, not unless he cannot control it. When his obsessions start to control him, I worry. He has to be able to turn it on and off, so we practice that. I find the more he practices, the better he gets. The worst thing I can do is leave him alone for hours on end and let him just entertain himself with what language they speak in different parts of the world, write lists about it, or whatever (and this is just the latest craze....last year it was frogs!) . That would definitely hinder him. But when I make sure to refocus him (easy enough, we go off swimming or do some other activity) then I find the obession becomes less intrusive, something he enjoys without it dominating his every thought. It seems to me that my job is to help him learn to manage the autism (I say that as though it is easy!) and to keep my mind open for how to help him expand his abilities in all areas, as I would with any child, but the stakes are just a whole lot higher in his case!

Monday, June 19, 2006 | 16:45:56

Comment by Angel

I so agree. Sometimes I believe...we, and I say that in general terms, are looking for something, someone, some medicine, some therapy....something that will "cure" our children, make them "better", more "normal". We are the ones who are with our kids the majority of their lives. Just as a typical kid...same with our a-typical kid...it is our responsibility to love them, work with them, guide them, help them. I am not saying not to take your child to therapy...please...it is crucial. But don't let it stop there after 30 minutes or an hour session. Take what you have watched...take it home and work it there with your child. I am amazed in hearing how your son is doing. Joshua has having incredible progress...and he has also started having some severe obsessions...which we are working through. Marti, thanks for your insights and sharing your heart, and Karen thanks for your words as well! My son is my son and I love him dearly!

Monday, June 19, 2006 | 19:10:57

Comment by Kym-Berly

After 2 years my son finaly won and important battle this week, the change in a diagnosis from pdd nos to asbergers.Marcus is 6 years old and a poster child for the spectrum, He is one of the most beautiful children you will ever see. He is intelligent witty and can argue you to death over the littlest things. Right from the start, we knew there was no cure for the disorder our son, has, but with perserverance. Marcus now speaks at grade level has friends and has started to develop other interests outside of his beloved dinosaurs.I now run a support group on yahoo for other mothers, and always warn new members about burn out, it is the biggest risk a mother can face. It is heartening to see so many people speaking out now about the disabilitys our special children face.I think the more us mothers and fathers speak out and seek each other out, the better off we all will be! This is a society unique to itself, and only through words can we dispel the supposed miracle cures to be found. What i will always wonder, is if the parents who kill their autistic children had, had the support like i do, would they have been in the situation they were in ? I think the only thing close to a cure there will ever be is awareness and intervention for the parents of theese special children. I am glad to see a book frrom a mother of a autistic child, out there. It gives hope to me that we are nearing a future of awareness and aceptance.

Saturday, June 24, 2006 | 14:15:01

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