parenting


 

But that’s the problem with this whole autism business; we want precisely what is not available to us — something definitive, like a cause, a cure. Enough, already, with the ambiguities, the gray zones.

 

Still, it was definitiveness that was worrying me when I began reading “The Kids Who Beat Autism,” Ruth Padawer’s cover story in the Aug. 3rd New York Times Magazine. Mainly, I didn’t want to discover all the things my wife, Cynthia, and I could have done and didn’t. That thought keeps me up enough nights as it is.

via The Kids Who Don’t Beat Autism – NYTimes.com.

Joel Yanofsky’s reaction to the recent New York Times Magazine article on The Kids Who Beat Autism strikes a chord within me, the familiar angst among parents of autistic children: Could we have done better? Did we miss something that could have helped? What if we didn’t have the time/resources/energy to do ABA (something that did not become widespread until later)? Could our child have been among the approximately 10% who “recover” from autism??

Some people would say that Rob is among that 10%. He is certainly “indistinguishable” from the non-autistic population in casual interaction, but he has some social deficits that become more obvious in extended and/or repeated interactions, and that affect his ability to hold certain types of jobs. Could any of this have been helped if he had been diagnosed earlier, and if he had been given intensive ABA treatment? It is hard to say. We feel fortunate that he is highly functional. But I would not say that he has outgrown, recovered from or “beat” his autism. The ambiguity of the diagnosis makes it difficult to assess his recovery.

Rob was not diagnosed until about two months before his sixth birthday. He was not withdrawn into his own little world so much, as he was hyperactive, aggressive, destructive, obsessive, and socially inept in our world. He was verbal, could make eye contact (although he didn’t like to), and we were more concerned about his aggression and destruction than anything else. We concentrated on intensive sensory integration therapy, and the therapies through his school: speech therapy, physical therapy, social skills training, behavior therapy (although not as intensive as ABA).

Rob still has fine motor issues that are very particular (he is a graphic designer, and can draw using a mouse; but not a pencil or pen; his writing is still pretty illegible, even his printing). His gross motor skills are excellent, and he is very athletic. He is intelligent and highly verbal, but still finds social interaction to be stressful. He tends to go into social or psychological “defense mode” easily, still; but at least it is no longer accompanied by physical defense mode as well. He has had some success in community college. He has had some success in work, along with some failures.

If we had to do it over again we would certainly have tried ABA if he had been diagnosed young enough. I think by age six it may have been too late, however. For Rob, I still think the best thing was the sensory integration therapy, because until those issues were addressed it would have been difficult for him to focus on anything else. But I am not an expert, only a parent who tried to do her best in a highly ambiguous situation.

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\’Mr. Spock goes to church\’: How one Christian copes with Asperger\’s syndrome – CNN Belief Blog – CNN.com Blogs.

This sounds very much like the experience of Rob. We were in church a lot when he was growing up, and as of now he is an agnostic, because he says he has never had a “spiritual experience.” I can just imagine what most church services look like to someone who doesn’t really get the emotion or sense of belongingness of church. But I really like how this guy has come to embrace what is really the important part of church: Jesus, and his simple truth: Love God, and love your neighbor.

This is the program we sent Rob to. The Arches program was wonderful.

 

Copper Hills Youth Center

5899 West Rivendell Drive

West Jordan, UT 84088

801-561-3377 800-776-7116

Website: http://www.copperhillsyouthcenter.com

Copper Hills Youth Center is a 126-bed private adolescent residential treatment center for teenagers 12 – 17 years of age. Programs and services offered include: boys residential treatment, girls residential treatment, day treatment and Arches – a program for individuals with Asperger syndrome.

via Autism Residential Programs | Utah Parent Center.

 

Review: Autism the focus of thoughtful ‘Falling’.

This sounds much like my household several years ago. What many insurance companies and state offices don’t realize is that residential treatment or residential schools may be necessary for some of these auties. The tragedy is that you often have to go through the criminal justice system to get any treatment, and treatment specifically geared to people on the spectrum is few and far between, and very expensive. But sending Rob to one in Utah for nine months turned him around and helped him get a handle on his violent acting out.

Tag ‘Tool Kits Page’ | Autism Speaks.

The Autism Speaks website has a page of “toolkits” that you can download for free that provides help and resources for autistics and their families on a variety of issues!

I especially recommend the one on challenging behaviors, but I can’t seem to link to it directly. So follow the above link and scroll down the web page until you find the toolkit on challenging behaviors.

Claire Smith, 18, of Rockville, whose 15-year-old brother is autistic, describes it this way: “I try to make sure that they don’t have to handle me. As much as possible, I try to stay out of trouble. . . . I try to not be the one they have to worry about . . . to be responsible and patient and take stuff off their hands whenever I possibly can.”

via Autism can have large effects, good and bad, on a disabled child’s siblings – The Washington Post.

This was definitely the effect on Rob’s older sister, Joy. I regret very much that so often I expected her–indeed, relied upon her–to be the responsible one. I think this was somewhat unconscious, though, on our parts: we were proud of her maturity, her intelligence, her capability, for her own sake and on her own merits; but we also liked having something positive to say when asked about the kids. So much of the news about Rob was bad news, especially in the years when he was between 10 and 16–just the years when Joy was blooming in high school and college–and so I think she sometimes felt that we only valued her for those things. Which was not true at all. And sometimes we were very overwhelmed, so that I was not as available for her emotionally as I could have been. But I wanted to be. It is one of the things I regret the most now, in retrospect.

She realizes that now, of course, and she did then too, on some level. I tried to make sure I got time alone with just her (my husband and I each took her on “dates”); I tried to let her vent about her frustrations with her brother without judging her; and I tried to ensure that she got adequate time with friends and got to pursue her own interests.

The psychologist in this study says that the main thing that predicts how well siblings do with an autistic sibling depends upon the reactions of the parents. So do what you need to do to get support. Seek counseling, use respite, take antidepressants or anxiety medication if you need to. Take care of yourselves so you can then take care of your kids.

 

 

The average Icelandic father today at the time of conception is about 33 years old; much older than in the past. The authors explained that epidemiological studies carried out in Iceland have demonstrated that schizophrenia or autism risk in offspring is considerable greater the older the father is.

via

Rise In Autism Rates Partly Due To Older Fathers.

Since men are waiting to have children until much later in life, this may explain the rise in autism cases. Rob’s father was 31 when Rob was conceived; my father was the same age when he conceived my brother (AS and bipolar).

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