Growing up fast

27 Mar

I wrote a few days ago about autism, murder, crime and morality. The conclusion I reached was that based on the studies I read, criminality was uncommon among autistic people compared to non-autistic controls. Morality was also present in all degrees of autistic severity.

In a disturbing and frightening post at Salon yesterday Ann Bauer told the world about the reality she faces with her autistic son Andrew.

She used to be someone who according to herself:

…thought of his autism as beautiful and mysterious.

And now she feels that:

[I must]…break the silence about autism’s darker side. We cannot solve this problem by hiding it, the way handicapped children themselves used to be tucked away in cellars. In order to help the young men who endure this rage, someone has to be willing to tell the truth.

I agree that people should tell the truth. But the truth is not how one feels at one point in time. The truth is separate from onesself and endures after you are gone.

Why is it so difficult for people to see more than one side of any equation? Autism _is_ a difference. It is also a disability and to some a disorder.

By the same token autistic people can be violent. They can also be joyous. Is the joy a product of their autism? Is the violence? Or could it be that people are different the world over regardless of their neurology?

I think Ann Bauer should definitely talk about her son. But I hope she doesn’t see her son as ‘the truth, the whole truth and nothing but the truth’. Because the truth is also Temple Grandin who doesn’t live in a cage. The truth is also Katie McCarron cruelly murdered by an NT mother. The truth is also Sky Steuernagel, Amanda Baggs, Alex Bain, Conor Doherty, Megan Leitch etc etc.

What I’m saying is that the truth about autism is not one persons agenda but a reality that autistic people experience every day. Most of these people are nice and a minority aren’t. Some commit crime. The same is true of bipolar people, gay people, NT people, chinese people etc etc.

My own autistic child turned 9 in Feb. Xe is in the 99th percentile for her age/height and is also well built too. Xe sometimes headbutts, pinches and hits and we struggle to tackle why this is and how we can help. The local education authority are no help. The best they can offer is one session of speech therapy every 3 months. So we taught ourselves and we improvise a lot too. But xe is still my child and I wouldn’t swap xyr for the world. Xyr autism is part of that. I don’t think xe would be who xe is without being autistic.

So because xe has issues should we expect xyr to be violently out of control as xe grows older? I don’t see why. Might xe occasionaly be violent when we fail to understand xyr? Possibly.

But everyones different. I don’t want people having false negative expections of my child because xe shares a diagnosis with someone who is violent.

14 Responses to “Growing up fast”

  1. Navi March 27, 2009 at 14:52 #

    Of all the reviews I’ve read on this piece, no one is quoting this very important part of the piece, which was unfortunately saved for the last few paragraphs:
    “Whether there is a definitive link between autism and violence — between Trudy Steuernagel’s situation and mine — I cannot say.

    And even if it exists, the cause is not clear. Our adult son’s behavior could be the outcome of living daily in a world where everything hurts and nothing makes sense. It could be the result (as some scientists have postulated) of excess testosterone on the autistic brain. It could simply be wild coincidence that I ran across this particular story during a time when I was looking for answers. Any of these is possible. I just don’t know.”

    She isn’t using her article to say all autism equals violence. She’s using it to say yes there are very beautiful autistic people that are violent and that seemingly cannot help it. This article on its own is no more the truth than her previous, positive articles. Together they are the truth.

    My son is 6, he’s picked up a habit of hitting. It appears to be a form of play. He’s not trying to hurt but the fact of the matter is he’s strong and it appears to be really difficult for him to control that strength all of the time. We and his school are scrambling to find a resolution, to get him to stop. The school is trying to front load him with attention, so hopefully he doesn’t feel the need, but it really is difficult.

    Honestly, it appears in this case, the failing was the lack of services for students between ages 18 and 21, the fact that here in the US, if a child performs well, they lose services, even though it’s those services that are enabling the child to perform well.

    The sad fact that the resources aren’t available to provide everyone with what they need. Hopefully, our children will have a better chance.

    But honestly every time my son gets into a giddy fit and starts smacking, I worry. What’s going to happen when he’s older and stronger? I worry if even though his program works wonders and offers options for inclusion, if he might be better off in the school for only disabled children, which has a greater number of sensory tools with which to help him; which has a swimming pool on the campus so he could swim weekly, rather than twice a month (water seems to provide great help to him) but the schooling there isn’t as good as the schooling where he is at now. If I could transport his teacher & para pros along with him, I would… I feel at a loss and my child is in a full day program specifically for autistic children…

    http://tinyurl.com/d4truf That’s an interesting review of the piece as well.

  2. Joseph March 27, 2009 at 15:25 #

    I think it’s important to recognize Ann Bauer’s difficult situation, but at the same time, I don’t believe she’s telling us about autism’s darker side. She’s telling us about humanity’s darker side. Teen violence is common. Of course, a violent NT teen will be different to a violent autistic teen.

    Incidentally, it appears that extinction, such as that used in ABA, increases the risk of aggression. See Iwatta & Wallace (1999).

    Physical punishment has also been associated with aggression.

    That makes me wonder about the unpublished adult outcomes of autistics who underwent ABA a generation back.

  3. Joseph March 27, 2009 at 15:58 #

    To further put it in perspective (I know this has been done in several different ways) I have a copy of an adult outcome study of autistics of all functioning levels: Eaves & Ho (2008). Half had verbal IQs below 50, half above 50.

    They find that 25% had “aggressiveness” as an outcome variable.

    That seems like a lot, doesn’t it? Well, let me quote some statistics from the National Youth Violence Prevention Resource Center (US based).

    Aggressive behavior is a serious problem among teens.

    · Almost one in five students in grades 6 to 10 say they have bullied others in the past year.

    · More than one in three high school students say they have been in a physical fight in the past year.

    · Between 30 and 40 percent of male teens and 16 to 32 percent of female teens say they have committed a serious violent offense (e.g., aggravated assault, robbery, gang fights, or rape) by the age of 17.

    · Over 1,700 youth under the age of 18 were arrested for homicide in this country in 1999.

    So for those who are parents, yes, there’s a non-trivial chance we’ll have violent teens, autism or not.

  4. Chris March 27, 2009 at 16:42 #

    Just a reminder that this is not unique to autism. They are individuals, and as individuals there are variations in behavior.

    This is just anecdotal, I know, but so was Ms. Bauer’s essay: many people have an image of people with Down Syndrome as sweet and lovable, but that is not always the case. When my son was in the waiting room to be evaluated by the school district in the Child Find program (part of the American Individual with Disabilities Education Act) there was another little three year old in the room who had Down Syndrome. His caretaker warned us to make sure our son did not get too close because he often hit other children for no apparent reason.

    This is not just an autism issue. Remember that schizophrenia has an incidence of about one out of hundred, which is much higher than the much vaulted “OMG, autism is 1 in 150!” scare stat (it runs in families, and can manifest in young men in their last teens and early twenties, and women it can be later — surprise, surprise, I am part of a family that is affected by this, so I looked it up, I believe I found that information in the Mayo, wait… not there, but it is here: http://www.schizophrenia.com/szfacts.htm ). Not all are violent, but the need for services is still vital, as noted in an article this week by Harriet Hall:
    http://www.sciencebasedmedicine.org/?p=410

    Fortunately, our family member is not violent. Unfortunately this means that after getting out of the hospital after a psychotic breakdown, that was the end of any kind of treatment. No followup, no enforcement of the medication regime and absolutely no out patient care.

  5. Chris March 27, 2009 at 16:48 #

    Oh, rats, my comment got stuck in the spam filter. As a part of a family affected by schizophrenia, I linked to a site that had the scary stats, but also this:

    People with schizophrenia are far more likely to harm themselves than be violent toward the public. Violence is not a symptom of schizophrenia.

    News and entertainment media tend to link mental illnesses including schizophrenia to criminal violence. Most people with schizophrenia, however, are not violent toward others but are withdrawn and prefer to be left alone. Drug or alcohol abuse raises the risk of violence in people with schizophrenia, particularly if the illness is untreated, but also in people who have no mental illness.

  6. Chris March 27, 2009 at 16:49 #

    And since this day is going so well… the block quote was supposed to get both paragraphs!

  7. Sullivan March 27, 2009 at 18:57 #

    Chris,

    I popped your first comment free of the spam filter, and edited your second comment. Let me know if that’s right.

  8. Chris March 27, 2009 at 19:24 #

    Thanks! Now it just makes my third comment look silly 😉

  9. Another Voice March 27, 2009 at 20:28 #

    It does become very tiresome, when unpleasant things occur it is the dark side of autism; good things then occur in spite of autism.

    When an NT teenager is violent is that the dark side of parenting? It seems that for non-autistic teenagers we have a list of things to blame – drugs, the school system, parents, bad company, the police, social services and so on. However, once the Dx is there we look no further.

    Of course the advocates then arrive to twist the violence to serve their own purposes.

  10. Brenda March 27, 2009 at 20:50 #

    I did not read all of Ms. Bauer’s article; it was just too painful. However, I did note that her teenaged son was on various medications, not of which were named. As we’re finding out, medications that work one way on an adult brain can work much differently on an adolescent brain. It seems likely that there would be even greater differences if the adolescent were autistic. I’m not assigning blame, please, understand that, but the medical system is simply not educated enough on what can happen to be giving these medications out to neurologically different children.

    Additionally, her son was institutionalized, which obviously had a bad effect on him, as was made clear in the article.

    She certainly had cause to have her son removed from her home. I just hope her son is able to adjust and adapt, and that things improve for both of them.

  11. Paulene Angela March 27, 2009 at 23:18 #

    Thanks for this really interesting post.

    Once those hormones start jumping and shaking it can be nerve racking for most parents/ carers/ professionals etc.

    Why does this case remind me of those kids that get hold of a gun and go on a mindless killing spree ….. frustration, irrational behaviour, self-hate, confusion, lack of self esteem …. it’s endless.

    I really believe Andrew when he says “I’m bad now, I can feel it. I can’t help the things I do.” My heart goes out to him and his family.

    All I can say is that’s one massive chemical cocktail.

    My solution, and I would do this for my own son, God forbid that it ever happens to him/us, but it could.

    Please send these kids out to live on a farm for 2 years, minimum, let them scream, shout, unwind, chill, cry, laugh whatever. Introduce them into some healthy physical work, let them know how important they are to the farm life and slowly, if they want!!!, introduce them back into our “very complex and often frightening” NT life. By the way, aren’t the farmers crying out for extra labour.

    Have you heard of the phrase “we need to be cruel to be kind”, and this solution is for “all” kids that are crushed and suppressed by our manmade system of rules and regulations.

    Is this how we really are meant to be living?

    I would not say “autism’s darker side” I prefer to say “society’s darker side”.

  12. Sullivan March 28, 2009 at 00:55 #

    “The truth is also Katie McCarron cruelly murdered by an NT mother”

    Katie looked so beautiful in her pictures. I will probably always have that image of her with her teletubbie in my mind.

    The world is a little bit poorer for the loss of Katie. That is part of the “truth”.

  13. Steve D March 28, 2009 at 04:28 #

    Nice post, Kev. You’ve captured a lot of what I wasn’t able to articulate when I wrote my post here.

  14. Maddy March 28, 2009 at 16:15 #

    Well I’m glad to see that you’ve finally made it to ‘top autism sites!’ Similarly although mine are a way from teenagerdom at the moment, I agree that it’s unfortunate that this is viewed as a darker side of autism rather than the often nauseous period of hormonal teenagers.
    Cheers

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