These simple points seem to escape those who perversely find joy in the fact that a child has an autism disorder. Equally irrational is the notion that society need not find a cure, or cures, for the various autism spectrum disorders. Autism, at least in its most severe manifestations, directly harms a person with autism when he or she engages in Self Injurious Behavior. Autism has also taken the lives of those who wander away from home or place of care as appears so often in the news. Some of us have been very fortunate when our autistic children are returned to us safely. It is impossible for me as the father of a severely autistic 15 year old son to respect the opinions of those who argue against curing autism disorders. That perspective, as I see it, is irrational at best and perverse at worst.
At Autism, Epilepsy and Self-Injurious Behavior Kim Oakley is a blogger who has previously posted a number of honest, informative Youtube videos showing her son's Self Injurious Behavior. In the latest comment on her blog Autistic behaviors, Antipsychotics and Angioedema: Warning she again addresses issues arising from SIB with an emphasis in this article on some medication side effects. Her son's SIB is described:
"Late June, 2011. My severely-autistic, non-verbal son had been smashing self in face and head for 3 days, despite numerous interventions to stop brutal self-injury. Protective gear was in place (karate helmet, Posey Mitts). Temporary restraints were ineffective (during this particular episode, he was so strong, broke out of restraints)."
In Access to health Casdok of Mother of Shrek has also written recently on her son's SIB:
"Drowning in a tidal wave. Rapidly repeatedly smashing his head hard onto a solid object trying to cause more pain to block out the pain he is already in - giving himself something to cling onto – to find his way back. This is what it looks like to me. A tidal wave of pain from what though – I don’t know. C needs investigations to rule out health issues.
His desperate eyes boring into your heart silently screaming for you to help him. But you can’t always.
I wrote about this back in Feb. The words ‘critical ‘crisis’ ‘life threatening’ have all been used and yet C has only yesterday got to see the right Consultant who would prescribe meds and a referral to see a Neurologist. Meds might take yet another week – ‘as we are busy’."
Casdok, as I understand her writings, does not believe that autism should be cured. She is obviously a caring and dedicated mother but I can not pretend to understand how she can fight so hard to help her son deal with serious self injurious behavior on one hand, including seeking medical treatment, and still oppose curing autism.
Self injurious behavior and other serious challenges presented by autism are exactly what motivate the many parents of autistic children who do seek cures for their children. I wish Cadok and her son well. I hope they do get the medical assessment her son needs.
For the sake of my own son, and others who are severely affected by autism disorders, I hope that the new trend in research toward understanding all of the possible causes of autism, and the decline of the autism is primarily genetic myth, will also lead to more effective treatments and some day a cure for autism.
21 comments:
The one thing you all have in common is 3 beautiful boys.
My mentor was a woman whose 3rd child, Judy, was autistic. They always said she was "missing a chemical in her brain that would allow her to talk." It wasn't that they didn't love Judy.
I agree we need to find a cure, though unfortunately the odds are overwhelming against it anytime in the forseeable future.
I suspect if a cure were available, CASDOK would be in line for it for her son. She just uses reaction formation and denial as psychologic defense mechanisms.
I have no problem separating my daughter from her disorder. My daughter IS a gift, her autism is not. Autism is no more a gift than my Grandma's early onset alzheimer's (which stole her life at 56) or the bipolar disorder I've wrestled with from 14 years of age. A couple of pills everyday has, literally, saved/changed my life ... you bet I want the same for my daughter!
Ah Harold. A previous commenter at my blog (long time ago) once told me that belief about whether or not autism can be cured is akin to religious belief, and is a very personal thing. I myself think that if there is a cure, we're a long way away from it. I also believe that people on the spectrum can be caterogized into numerous subtypes, this includes a group of people who genetically inclined to develop the disorder. I'm just glad and grateful that there a scientists and others working diligently to untangle all the mysteries that this disorder presents.
In the meantime, it saddens me when one parent attacks another because the beliefs don't match. We're all in the same boat...trying to do what's best for our children. Because we are all individuals, we end up approach how to parent a child on the spectrum in different ways.
Casdok IS trying to figure out the medical issue that is causing her son to present SIB. If you go back and read some of her posts you can see she has spent a lot of time figuring out the effects of headbanging on people with autism (there hasn't been much research on head trauma, other than athletes such as boxers and American football players.. Maybe she'll inspire a study). She's also trying to get doctors to help her... Can you imagine how stressed out she must be?
Anyway, I am asking you Harold, to put your judgement of her belief aside for a moment. Do you see a person who loves her son unconditionally? Do you see a person who is doing all she can to stand up for the rights of those with disabilities? Do you see a person who striving to see if her son's needs are met? I really hope you can at least try.
My last point is that I don't think her belief is hurting anything or anyone. She just wants people to accept her son, who is only a threat to himself (not others). Anyway her belief not going to stop people from untangling the great mysteries of this disorder... Just something to think about.
Julie L. I did not attack Casdok. If you read my post you will see that I acknowledged that she is a caring and dedicated mother. What I did do was express my confusion over what I see as her contradictory logic. Casdok, and you, express opinions about the reasoning of autism parents you disagree with ... including me. I do not construe that as attacking me though. And I don't have a problem with my judgment being challenged. No one should blog on these issues if they feel that disagreement with their perspective automatically equates with personal attack.
Don't stop hoping Harold. I'm not.
While I agree that accepting one another as we are is important, the issue of autism spectrum disorders is far more complex than that.
If we just accept their SIB and the tendency many of them have toward violent outbursts we are not doing the affected person or his/her community any favors. Accepting my daughter's issues means just letting her continue to harm herself or putting other people at risk and I am not about to do that.
I will always accept my children and love them for the beautiful people they are, but I will fight their issues tooth and nail.
These kinds of aggressive behaviours need to be addressed when children are small. I appreciate that many refuse to use drugs. Drugs are a very personal choice and I respect that. We used risperdal from that age of 6 to 8.5 when it rebounded but it allowed us to get ahead of the headbanging and for the most part get it stopped. Not entirely, but atleast now when he does it - every few months - it actually hurts and he stops. We're at going on 12 and the moods are in full swing - gotta love the tweens - the mouthies are out of control and the behaviour is coming up again. We don't anticipate surviving puberty without a return to meds. If he can't handle his own moods, then IMO it is cruel as a parent not to look for medications to help. And my aggressive one is the one with NLD not the severely autistic one and we are having difficulty with "theory of mind" and reasoning with him.
Aggressive behaviour... self-harming or lashing out is NEVER communication. I am always shocked when parents claim it is. Harming yourself or destroying things is an appropriate response?? Since when?? It is aggression and it needs to be controlled. Chemically or by the person doing it if they cannot understand how to do it themself. Then, once they are able to do it themself with the help of the meds you can work towards teaching them self-control.
I feel very sorry for Shrek and other adults in his situation. He should have learned control and a more appropriate communication/frustration release methods - even if it was banging a drum - long ago. His head/brain must be so badly bruised and he in an incredible amount of pain.
Cure.... Harold, we'll fight for the first spot in line.
FW2 - I am not sure I would want to take you on, one on one, for that first spot in line :-)
Amen!
Harold thank you for your wishes.
Would just like to add, C did have early intervention. He has had huge amounts of specialist intervention his whole life working on more appropriate communication and frustration release methods. And we will continue to work on this. C has also had drug intervention at various stages too, when young and in his teens. So I am in total agreement we need research, better understanding and more effective approaches.
FW2, I will disagree with you on SIB not being a communication tool, we had numerous interventions for my child when he was very young, and he is still non-verbal at the age of 19 and still hits himself.
I follow Harolds blog and that womans blog about her severely autistic son, her son is exactly like mine. Every chance we get, do tons of testings to rule out any medical problems that might be happening, which he cannot communicate. Every time he falls into this SIB fit, we find out it can be related to pain, changes in environment, or for sensory relief. It takes us awhile to put two and two together, but when we do, everybody is satisfied. That doesn't mean whatever worked is what will work the very next day, every time its a different scenario and situation.
Harold, I never stop believing in a cure, although in our case I rather see a cure for epilepsy first. Autism is so complex and different with each individual that I doubt we will ever see a cure in our life time, but I still have hope!
I honestly believe though if my son didn't have epilepsy he wouldn't be as severely affected as he is. I believe that is the same with the blog of that woman with her 21 year old severely autistic son. Just some food for thought.
Casdok, best of luck to you and your son, my boy is just as severely affected except he doesn't 'stim' very much, instead just walks consistently staring into space off in his own world with lots of self injurious behaviors.
Harold - I honestly don't believe that there is any parent in the world (who cares a pin for their child) who would not want SIB cured.
Those who say they don't want a cure are NOT talking about SIB. They are talking about HFA and Aspergers - about differences that have the potential to be useful and/or enjoyable.
I am hugely fortunate in that I can say something like "isn't it great? my HFA son's autism makes him less likely to have stage fright when he plays a clarinet solo on stage, because he's oblivious of the possibility that others might judge him." And I can be a proud mom making lemonade from lemons.
But trust me, if my son were beating his head against his wall, I, too, would be racing you to the head of the line for a cure.
Lisa
I disagree with Lisa Jo when she says any parent in the world (who cares for their child) would want a cure for SIB and the only parents who don't want a cure are apparently parents of high functioning/Asperger kids. Dr. Kristina Chew has stated on the record, when interviewed by ABC a few years back, that she would not want a cure for her son and he is extremely low functioning and has numerous SIB's (e.g. head banging to the point where he has a dent in his forehead from what she describes). I think most sane parents would of course want a cure for autism and then there are parents like Chew and Casdok who glamorize autism for their own attention seeking needs.
-JM
'JM', suggesting that Casdok 'glamourises autism' (how? I've been reading her blog for almost 2 years and I don't see it) is a pretty vile accusation. I don't see that she has any motive other than sharing her record of her and C's lives, and seeking to raise awareness of severe autism and all that comes with it.
Many on this post and comment thread need desperately to learn to respect difference - of opinion, philosophy, lifestyle, attitude, writing style - whatever. Different from what you think/say/do does not make you right and everybody else wrong.
Becca, your point is diminished by your failure to follow your own advice.
JM-Diane Sawyer said in that interview the following regarding the attitude of parents like this, "it's a beautiful way of justifying heartbreak." I don't agree with her wording of "beautiful" when it comes to such denial but her point was well taken. It is hard to tell if Casdok and Chew are really so blind or if their stance just makes for good writing on their blogs. They are attention seekers, that's for sure.
My grandson has just been labeled "autistic." In my research I found an article by Robert F. Kennedy Jr. Pease type in Deadly Immunity and read. My grandson is presently starting a gluten free and casein free diet and is taking B12 and enhansa. He has improved his behaviors noticeably in just a few day. There may be more than one cause of autism, but we need to take seriously any possible treatment that could reverse the symptoms.
Any sane person would want a "cure to autism." That said, I think where we find arguments over wanting vs. wanting a cure is when we have situations like my own, where you're often drowning in the day to day realities of self-injurious behavior or seizure activity, so you're not focused on so much a "cure" to "autism" but a cure to the acute crisis needs that plague your child. So, you are more focused on curing the self abuse or seizures. I'm still a little foggy myself on the term curing autism, since it's so complex. I'd rather here researchers say, we want to cure dopamine dysfunction in autism. I want to hear something concrete and specific. That's just me. Anyway, I love your blog and you are an amazing father.....
Kim, I thank you for your input and your kind words. Coming from you and the courage you and your family have shown the world they mean a lot.
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