Category: autism

Emily asked me what I thought about David Kirby’s recent post on autism, mitochondrial disease and vaccines. David Kirby is the author of Evidence of Harm and a strong promoter of the anecdotal claim that vaccines cause autism and are responsible for the increase in autism diagnoses we have seen in the US recently.

I don’t believe that there is a convincing link between vaccines and autism. I believe that the increase in autism diagnoses is due entirely to the broadening of the diagnostic criteria. In other words, more children have been diagnosed with autism spectrum disorders because the definition of autism has changed in such a way that it now can fit six people out of every thousand instead of one.

Here is an excellent and very readable book on that topic: Unstrange Minds, by Roy Richard Grinker.

I don’t think there are any more autistic people now than there ever have been before. I think we’re just finally seeing the autism for what it is.

I will look into Kirby’s reasoning more thoroughly when I have time. I’m willing to believe that vaccines could make an underlying condition worse, which is what that post seems to be saying? I am tired.

(NB: Most of you know this already, but Bede’s autism diagnosis was given before he had any vaccines. We vaccinate on our own delayed schedule chez Glee, and so I am completely sure that his autism is unrelated to vaccination.)

A new study has confirmed what the Gleeson family already knows: melatonin helps autistic kids sleep.

The study is the largest of its kind, looking at the medical records of 107 children with autism, ages 2-18, who had tried varying dosages of melatonin for insomnia. Twenty-five percent of parents reported they no longer had sleep concerns after using melatonin, 60 percent of parents reported the sleep problems had improved, 13 percent still had major concerns and only 1 percent (one child) had worse symptoms.  Only three of the 107 children studied reported mild side effects.

We’re in the 25% camp. Bede, who will be five next month, takes half of a 1mg tablet of melatonin every night and has since July of 2007 and I can say it has literally changed our lives. He used to be awake until 2AM or later four to five nights out of the week, still rising for the day around 8, with no nap. Now we give him his melatonin around 10:45PM and he is asleep by 11. Sean is the bedtime guy around here and it was like to killing him. No more!

finger-flick to Autism Vox

Karen McCarron guilty on all counts.

 Finger-flick, as usual, to Autism Vox.

Katie spent much of her life in the care of her paternal grandparents. Here are some of her grandfather’s words about her. 

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter.

Continue reading at http://therunman.blogspot.com/2008/01/katie-mccarron.html

This is especially harrowing. Almost unreadable. You might not want to read it. I’m not pulling any quotes this time.

Day 5 – Karen McCarron takes the stand

Autism Vox is doing a great job covering the trial. Here’s some of Day 3…

Gail McCarron recalled that her daughter-in-law said “‘I really wish Katie were dead,’” at least three to five times and also that “”if Katie had cancer, I could deal with it. But I’ll never accept autism’.” Gale McCarron also said that “toward the end,” Karen McCarron did not call Katie by her name, referring to the three-year-old as as “‘the kid.’”

And a bit more….

[Witnesses] said the topic of every conversation with her revolved around curing Katie’s autism. Negativity and hatefulness were ceaseless when she discussed the child, who they say she never hugged, kissed or praised after she was diagnosed with autism.

“It was never good enough,” Jennifer McCarron said. “She looked at Katie as a problem, and she got rid of her problem. There’s nothing more to it than that.”

As I write this, Bede is happily playing on his computer behind me (currently he’s at http://fontso.com where he loves typing words and phrases in different fonts) and getting up every few minutes to run over to the front door and back to his chair as he warbles, grinning hugely. Lest you think life with Bede is always idyllic and charming, I will also note that last night at around 10:30PM he pooped (runny, bleck!), tried to clean it up himself (I appreciate the thought, not the actuality. Also, he was nakey.) and took a shower while I cleaned his chair and the glass of the computer monitor where he had gotten some. He did it in the space of about 2 minutes while I was getting a cup of water for Gilbert.

No it’s not always easy. But it’s always more than worth it. Always.

I don’t have cable or watch much TV, so I don’t know if this trial is getting any national publicity.

Karen McCarron had a daughter, Katie. Katie was autistic. Katie is described by her loving and heartbroken family as “beautiful, precious and happy.” Here’s a picture of Katie:

(What follows involves the murder of a child, so if you don’t want to read it I understand.) 

Karen decided she wanted a “life without autism” and she suffocated 3-year old Katie with a plastic bag while she was at her (Karen’s) mother’s home, then took Katie’s body back to their home, carried her body upstairs (past other family members) and put her in bed, then returned to her mother’s home to dispose of the bag.  The next morning she tried to overdose on over the counter medication, and confessed to the police.

After countless delays, Karen’s trial begins tomorrow. I trust that justice will be served.

Myself, I don’t want a life without autism, thanks. I like my life just fine. Rest in peace, little girl.

Hala had me go to Wikipedia for a brief intro to the social model of disability. I’m still reading and learning, but this stuck out to me, and is exactly what I’m getting at:

The social model of disability is often based on a distinction between the terms ‘impairment’ and ‘disability.’ Impairment is used to refer to the actual attributes (or loss of attributes) of a person, whether in terms of limbs, organs or mechanisms, including psychological. Disability is used to refer to the restrictions caused by society when it does not give equivalent attention and accommodation to the needs of individuals with impairments.

Thanks Hala. You’re teh awesome.

We applied for SSI for Bede last year. I can’t remember if I blogged about it at the time or not. For those who don’t know what that is, SSI stands for Supplemental Security Income, and it’s much like Social Security Disability, except it’s for people who have never paid Social Security taxes and is funded from the general federal budget. So, in a general sense you can think of it as being like SSDI, pretty much.

Anyway, we found out today that he was approved for it. It maxes out at around $640 a month, and we don’t yet know how much he’ll receive. We plan to immediately begin using it for at least monthly occupational therapy (he’s never had any because we couldn’t afford it) and more frequent visits to his psychologist. All of that will depend on how much his payment is, which will be dependent on our income, which we have to update for the SSA. Clear as mud?

I have some interesting feelings about the whole thing. I’m VERY happy that this money will be available to Bede. I know he will really benefit from OT and seeing his psychologist more often. But at the same time it is a heavier yoke to bear for me as I am reminded that my son is considered disabled. Even the gummint thinks so. Myself, I forget that he is. It sounds silly that I could live with this little naked boy who cannot really speak and forget somehow that he is, but I do forget it.

I don’t think of him as disabled. Impaired, handicapped… sure. But not disabled. I just don’t think that’s what he is.

Ah me. Ran out of steam, I think. In the meantime the ABFH has a post on a similar topic, here. She’s more eloquent than I. She didn’t have a 22mo clinging to her leg or trying to reboot the computer, no doubt.

Now that there’s a handicap.