A really tough question
January 8, 2007 by Kristina Chew, PhD
Filed under Health
Does AS or autism make a person more likely to commit suicide, as in the case of Burt Bacharach’s daughter?
This is a question I cannot answer; I read it in a January 8th article in the Independent that is entitled The Ballad of Nikki Bacharach. The article notes that Bacharach had penned his song “Nikki” in 1966 for his daughter, and that Dr. Lorna Wing and others
have highlighted issues of psychiatric trauma and varying degrees of depression among young adults with AS, something that seems related to their awareness of their difference from others. One paper on the subject claims that five out of 22 young adults with AS had tried to take their lives.
In regard to all this, I wanted to highlight a comment left by John, a father of twin 11-year-old-boys with Asperger’s, yesterday:
There are plenty of people in the world who are only too happy to make life miserable for people with Asperger’s withough any direct knowledge that the person has the syndrome.
My kids have both been horribly bullied because they “use words that are too big” or “know too much,” because they seem different, sometimes a little out of it, perhaps a little naive. They have a cousin who sniffs it out and tries to take advantage of it. This sort of behavior threatens to bring down their self esteem, though we have raised them in such a way that they are able to deflect such treatment. Still, it doesn’t make them think of Asperger’s in any particular way – it only makes them look at themselves in a sad way.
I also wanted to highlight John’s suggestion that the most important thing we can do is to help our autistic kids “focus on their strengths and their family and use both as the muscles that make taunting meaningless to them”—-and, I would like to add, that teach the taunters the meaningless of their taunts.
How can we make the world safe for difference?
I believe that a positive self-image is essential for any growing (& grown) person. I have seen how this has helped my 10-year-old son Brendan become an effective self-advocate, which helps him to diffuse situations where kids might bully or take advantage of him because of his differences, by educating the kids (& sometimes adults, too). I’m not seeing self-esteem play as much of a role in helping him when he’s stuck in depression & wishing he didn’t exist, which happens fairly frequently these days, but then I don’t think his bouts of depression are caused by his feelings of differentness as much as they are a part of his differentness. They seem to be more a result of getting stuck in a pattern of thinking & not being able to get out of it for a while. In the past he’s tried to hurt himself while stuck in these self-destructive patterns, so this issue is a big concern for us (& I feel it particularly personally when I read that someone with AS/autism has committed suicide). We have an excellent child psychologist & psychiatrist as part of the “village”, so we’re getting the best help we can. Do I think that changing how society perceives & treats my kid will affect his longevity- you bet I do. But for Brendan, it’s not the only factor in his ongoing struggle to survive.
I think that the suicidal tendency would be higher only if they had depression or bipolar disorder along with their ASD.
As for the bullying issue, the solution might be sometimes moving the kids to a different school where classmates will be more friendly and supportive. Parents of ASD teens in my area have reported that their kids do great in certain schools with neurotypical peers.
When I was I kid I don’t remember any bullying against the nerdy types or kids with clear SPDs; the worst that would happen is that other children might laugh behind their backs. My school was pretty mellow and there was a psychologist that every once in a while would promote activities where we were supposed to play with and get to know better the kids that weren’t in our “cliques”.
I was bullied in school for being different (what I now know to be AS and dyspraxia)- the only reason why I put up with it was things were much worse at home. I also suffer from depression, but although being different hasn’t helped, it’s not the cause of the depression either.
Self esteem is crucial but maybe Rhino hide is too. At the moment I don’t know how you achieve either. I do know that when my chaps were diagnosed one of the clinicians recommended drug therapy to ward of the ‘real’ risk of anxiety, depression and suicide in teen years.
Cheers
Charlie, due to his educational= need=s, is in a seld-contained classroom and his interactions with other children are highly structured—-generally, kids (when we’re out in public in stores etc.) look at him with curiosity (more or less depending on what is going on). But I do think there’d be issues with bullying if he were in a regular classroom (though sometimes I wonder if there might be issues with him being different regardless of autism or not, as he is half-Asian). Jim and I are 100% plus positive in the messages we send at home.
A work in progress, this.
We dealt with depression and self-hate a few years ago. All is under control now, but we watch and monitor moods carefully. Stories like this remind me not to become complacent.
Re bullying – S. is in a self-contained classroom, one little girl is sometimes mean to him, but she tried to drag him into playing with her yesterday, and he was interested, so that’s good. But with C. and T., T. bullies C. and it’s difficult to do much about it sometimes. (Bullying in twins can be a big problem.) (T. is “most likely to be NT” out of the three kids.) I’m hoping as T. develops more empathy, he’ll be less mean to his sister and help her out more. (Eventually he’ll learn that he has to be nice if he expects any help with homework — in some areas, she is smarter than he is.)
about bullying and depression:
My son has AS and has also been assessed by our school district as “highly gifted.” Public school wasn’t always easy for him, socially. When he started middle school, things went downhill fast.
He was taunted at school and via email. He became so anxious about going to school that he simply refused to go.
We were lucky enough to find a place for him in a school for autistic kids that had a “gifted” program. Now, he is extremely confident and popular, surrounded by a group of bright, quirky kids who admire him for his strengths and not his “weirdness.”
I would tell any parent who was conflicted about sending their child to a “special” school: Don’t even hesitate.
Another parent of an AS son told me a similar story, though I think her son remained in the public school (it was middle school, too, I think); the cafeteria was a huge issue. Charlie attends a school in our down but, as he’s in a self-contained classroom, he is in a sort of “special” school, and this has been the right thing for him. I realize now that, in his previous school, the noise level of the other children (esp. as holidays approached) was probably very difficult on him (and his room was right near the cafeteria and the main office—-lots of noise from the halls). His current classroom used to be a music room and has some sound insulation. I do want him to learn to “be” as much as he can in the “regular” world (or however one might call it……) but, most of all, him being in the right learning environment has made all the difference.
The cafeteria has been an issue for Sam at times – that’s one of the few things outside the special classroom. (Individual therapy sessions are done in other rooms in the school.)
There were days that I wondered how he could stand it, given how things would go at the grocery store sometimes with some of the same sorts of sensory issues!
I have been struggling with high functioning autism for all my 50 years. My normal IQ and acquisition of language place me in the high functioning category, but I am otherwise severely autistic. I am also afflicted with Tourette’s and personality disorder as well as the sensory and coordination abnormalities that sometimes accompany autism spectrum disorders. People think of autism spectrum disorders as social disabilities, but my autism affects most of the skills required to function in everyday life.
I have such severe motor skill and visuospatial deficits I can’t keep house or do any other tasks requiring dexterity and organization properly. Although I seem intelligent and have above average ability in math and a few related areas, autism related cognitive difficulties leave me unable to do anything requiring more complicated skills like creative problem solving, putting ideas together, planning actions and making decisions and limit me to rote learning. I was born without the ability to cope with change and have been breaking down since the start of year 2000, when hard times hit. I have a fragile nervous system that can tolerate only small amounts of stimulation and work and is traumatized by the everyday stresses that others take in stride.
My fragile hold on sanity depends on several comforting routines I’ve been following for years. These routines are so important to my well-being that I live in fear of disruptions like power outages and all the things that can cause them. When routines are disrupted, I get such severe meltdowns people call me a mental case. Anything that threatens to interfere with a routine pushes me into a state of anxiety only sleep can relieve. When I’m anticipating something I dread like a doctor appointment or my income tax assessment, I can’t concentrate on anything productive. The sound of my phone ringing sends me into a state of high alert when I’m not expecting a call. I go through life like a animal on the constant lookout for predators. People label me lazy for not doing much with my life and refuse to understand that merely getting through a day uses up all my energy.
Unlike other people, I am unable to develop a wide variety of interests and enjoy nothing except for a few limited activities like biking. The brain wiring abnormalities associated with the autism and comorbid disorders make it impossible for me to even build the skills needed for most leisure and other pursuits and focus on anything for for than a few minutes. All the things people turn to soothe themselves like humor, spirituality, social life and art make no sense to me and even irritate my nerves. My brain works so hard at processing that even tasks I do best are mentally draining.
Low frustration tolerance and exaggerated sensory responses turn the tasks I find hardest and can’t do properly like housekeeping into torture. The intense irritation they provoke set off destructive rages that only quitting the tasks can end. Each day is a never ending battle to get chores done and find things.
Despite the mental turmoil I live with, I’d be able to enjoy a decent quality of life if I had a suitable living environment and support like help with chores. Unfortunately, my circumstances keep me stuck in Montreal, an abrasive, crowded and strife-ridden big city with a climate that makes the few activities I enjoy impossible most days and no services at all for adults with my needs. This city is so bad for me that living here is as hard for me as a war zone would be for a normal person. Now that I no longer have an onsite advocate and working conditions deteriorated, the part time job I held for several years is no longer suitable for me. I have no choice but to struggle with it and watch myself burn out because I don’t qualify for disability here and am unable to do any other type of work.
Severely affected Asperger adults need support in order to cope with life and function in society. I have none at all except an elderly father who is unable to understand my limitations, is not always available and is fed up with his role as my only support person. My family never planned for my needs as a disabled adult because they went into denial when I was diagnosed with autism at age 3. They tried without success to normalize me and refused to see me as a special needs child. I suffered through a childhood filled with emotional abuse at home and cruel teasing everywhere else I went.
The news about Nikki struck a chord because I am also living on the edge. I am too chicken to take my own life, but can’t stop thinking about legalizing assisted suicide. After spending 5 decades in all the wrong places and struggling to keep up with responsibilities and tasks that are too difficult for me, I burnt out. I feel like I’m drowning in a sea of increasingly complicated tasks. Instead of strengthening my nerves, a life of exposure to the knocks of everyday life weakened them even more. The more I try to do, the less I get out of myself. With hard times filling my life with more and more of the changes I have trouble coping with, I am always in a bad mood and behaving worse than ever. Instead of becoming the productive and reasonably adjusted adult a properly supported high functioning autistic can become, I turned into a rebel and slipped into a pattern of dysfunctional living.
We hear about the mildly affected autistics who make stunning accomplishments and the most disabled ones who spend their lives in institutions, but no one talks about the untold number of adults like me who are muddling through life in the community, burning out and either ending their lives or spending them getting into trouble. These unfortunate outcomes show that you can’t just throw an Asperger adult into mainstream and expect him to function well without support, especially in these tough times. It is sad that they have to go to extremes like ending their lives to get anyone’s attention.
Marla, thank you; I am still absorbing all you’ve written here. I hope it is all right if I highlight your last paragraph in a separate post—–it resonates a lot with me.
Marla said: “I have none at all except an elderly father who is unable to understand my limitations, is not always available and is fed up with his role as my only support person.”
I am so sorry, Marla. This is exactly what I hope my son never has to write. I wish someone could help you find what you need – the thing about Asp. and autism is that we KNOW how to help and support people, it just isn’t being done enough.
My 15 year old son has thrived in a public middle school because the administration and the teachers have made a decision to make it a safe and accepting place for all students. Teasing and targeting of other kids (SPED or not) is totally unacceptable. Before he was there, we were perennial pains in teachers’ and administrators’ butts, demanding that they make sure he didn’t get beaten down by failure or other kids. It was time-consuming and exhausting, and we were working with a pretty receptive district.
Something very big HAS to change in the society.
Marla (and all struggling with disabilities)
When things get tough please keep in mind this quote by Martin Luther King Jr.
“The ultimate measure of a man
is not where he stands
in moments of comfort and convenience,
but where he stands at times of
challenge and controversy”
Gerard Petillo
Parents of ANGELS
Bronx N.Y.
Marla (and all struggling with disabilities)
When things get tough, Please keep in mind this quote by Martin Luther King Jr-
“The ultimate measure of a man
is not where he stands
in moments of comfort and convenience,
but where he stands at times of
challenge and controversy”
Gerard Petillo
Parents of ANGELS
Bronx, N.Y.
Thanks for that, Gerard. Hoping we can all stand together and make some real changes—as I think we have begun to.