Saturday, February 17, 2007

Sweet Surrender - Autism's Siren Call

"In Greek mythology the Sirens or Seirenes (Greek Σειρῆνας or Acheloides) were Naiads (sea nymphs) who lived on an island called Sirenum scopuli. In some different traditions they are placed on Cape Pelorum, others in the island of Anthemusa, and still others in the Sirenusian islands near Paestum, or in Capreae (Strab. i. p. 22 ; Eustath. ad Horn. p. 1709 ; Serv. I.e.}. All locations were described to be surrounded by cliffs and rocks. Approaching sailors were drawn to them by their enchanting singing, causing them to sail into the cliffs and drown."

- From Wikipedia, the free encyclopedia

Parents and families of children newly diagnosed with autism will face many daunting, at times overwhelming challenges. As the father of a soon to be 11 year old boy with classic Autism Disorder I have dealt with those realities for the 9 years since my son was diagnosed at age 2. One of the more seductive challenges that parents will face is the siren calls of those who oppose any effort to treat, educate or heaven forbid change an autistic child for the better. Do not listen to the sirens' call.

The sirens will outright mislead you and tell you that autism is not a disorder or a disability, that it is simply another variation in the human condition, neither good nor bad. They will beguile you with tales of how autistic intelligence is simply different, perhaps even better, than the intelligence of those whom they label as NT or neurologically typical. The sirens will tell you not to mourn for your autistic child, to accept your child's autism; the will even tell you to find joy in your child's autism. They will encourage you to accept your child as he or she is and not to seek to change your child.

The sirens will not talk about such realities as lack of communication, self injurious behavior, or lack of awareness of potentially life threatening dangers posed by automobiles or broken glass. The sirens will not tell you that some autistic children are sent home from neighborhood schools sometimes in handcuffs or that they are sometimes housed in criminal detention centers for youths because no decent facilities exist in which autistic youths and adults with severe behavioral issues can reside. They will not talk to you about autistic adults residing in mental health hospitals.

The attraction of the siren's call is the attraction of sweet surrender. If a parent is told that their child's autism is a beautiful thing, a joy to be embraced by the parent it will be easier to let go, to give up and to refrain from taking on the enormous challenge of doing the best that can be done for your child. It is not easy to raise, care for and educate many autistic children. It is absolutely one of the most rewarding tasks a parent can face but it is challenging, stressful and costly. It would be easy to give up and let go. The sirens would encourage you to give in, hug your child (as though you don't already anyway) and not try to change your child with proven effective methods like Applied Behavioral Analysis.

Don't listen to the sirens' call. Do not squander your child's opportunity to learn, grow and develop to the fullest extent possible. Give your child the intervention he or she needs now. The sirens are not responsible for raising your child and providing him/her with the skills necessary to survive, prosper and enjoy life. That is your responsibility. The time to teach and reach your autistic child is NOW. Do not squander it on the sirens' foolishness. They will not be there to help your child when help is need. They will not help teach him/her to speak and read and brush his/her teeth. They will not be there if your child breaks windows and mirrors with his hands, bites his wrists, gets sent home in restraints or goes off to reside in institutional care. These are not exaggerated claims. They are realities that occur. And the best way to avoid them is to help your child now with proper evidence based intervention provided by properly trained service providers. And learn how to apply those interventions in the home yourself on a 24/7 basis.

Do not listen to the sirens. Love your child, embrace your child. But fight your child's autism and do the best you can for your child.

12 comments:

SUZANNE said...

*** WILD APPLAUSE ***

I could not agree with you more.

Just because I see my daughter's problems doesn't mean I don't accept her.

James said...

I must say that I disagree. Autism can be a disadvantage at times, but it can also be rather beneficial; I certainly wouldn't have my brain any other way. Yes, we're worse at some things than the 'neurologically typical' people, but at others we happen to be rather better. The challenge for you and hundreds of thousands of other parents is to help your son work around the negative aspects whilst encouraging him to put the positive aspects to good use.
Oh, and I don't suggest you tell your son it's a disability; he won't be truly disabled unless he thinks he is.

Autism Reality NB said...

Suzanne

Thank you for your comment. Autism does pose problems for many autistic children - and those who love, care for and raise them.

Autism Reality NB said...

james

Thank you for your polite expression of disagreement.

Autism is a disability. Because he is profoundly autistic My son engages in behavior which is self injurious and even life threatening. That is an objective reality that I as his father can not ignore.

I recognize that some autistic persons have great skills. That fact does not address the many cases of autism where the person is severely disabled.

I take great joy in my son. You can visit other comments in the archives of this site by looking under "Conor" if you want some confirmation of that fact. All the more reason to want to help him with his very serious challenges.

Again, I thank you for the civil nature of your expression of disagreement.

Harold L Doherty
Conor's Dad

Joseph said...

I recognize that some autistic persons have great skills. That fact does not address the many cases of autism where the person is severely disabled.

There's no mutual exclussivity there. A person can have great skills and be severely disabled. There are many obvious examples in the autism world.

Outside the autism world, consider Stephen Hawking.

Autism Reality NB said...

joseph

Your comments do not address the point of my blog comment.

The reality which you are unable to acknowledge is that a great number of autistic persons ARE severely disabled. The existence of some highly skilled, high functioning autistic persons does not in any way change the fact that many autistic persons are severely disabled. The neurodiversity movement does not acknowledge or even admit that reality.

I have done more than sit at a keyboard. I have, as a father, as legal counsel, and as a public autism advocate, worked with autistic children who were sent home in restraints and worked to get them back into a school environment suitable to their situation. I have also visited a mental health facility and viewed life for an autistic adult in that facility. In our province I fought to have tertiary care services for autistic children reinstated at a neurological care center after they were discontinued.

I know from real life experiences that there are many autistic children who hurt themselves and do not understand the dangers posed by ordinary elements of daily life such as automobiles and broken glass.

I do not have the luxury of donning rose coloured glasses. Nor do parents of newly diagnosed autistic children for whom time is important. It is unfortunate that the neurodiversity movement muddies the waters when clarity of thought, purpose and resolve is so critical for the futures of their children.

Anonymous said...

Hi all,
The DS community has struggled with how to adopt a positive advocacy approach for years. Like the ASD comunity people with DS range in skills and abilities... some are profoundly challenged and engage in self harm behavior, are easily manipulated by not so nice people and otherwise require constant help and assistance. On the other end of the spectrum some folks with DS are very able to make their way thru the world in an independent manner and graduate from high school and later attend college or university programs. Unlike the ASD community many within the DS community groups have adopted a very positive outlook with regard to the personhood of folks with DS and this is reflected in the style of advocacy they use (go here for a baseline of what I mean: http://www.cdss.ca/ ). This outlook has not stopped the DS advocates from seeking supports, intervention, thereapy, training, inclusion options, employment options and supported living resources etc etc. They have been active on all of these issues. The positive outlook the DS advocates have chosen to present is juxtiposed with that used in the realm of ASD advocacy. In many instances ASD advocates have used some very dark metaphors to explain to "joe public" what the issues are. I suspect the intent was to caputre the imagination of the average Canadian and to effect some positive outcomes in terms of services for autisitcs. However, the "echo" of this effort suggests that it has missed the mark. Metaphors that equate ASD to cancer or to a "living death sentence" seem to pop up with regular frequency. Not so nice.... and definitly not well recieved by many who have ASD and those who love them. I think the ASD advocates may be well served to adopt positions similar to what the DS groups have taken. From my perspective this does not mean that the process and approach used within ABA cannot continue. The difference is that the intent shifts. No longer is the intent to "cure" or "recover"... skill development (functional language, self help, self care, literacy, numeracy etc etc) becomes the goal. Within the DS community behavioral approaches have been par for the course for a long time. The principles of ABA can be found in many "programs" for people with DS... and the goal is skill development leading to independence (interdependence). The message regarding the value of the person with DS remains positive... and the instructional approach (ABA in some cases) is rooted in the basic premise of the importance of that person. The effort is to empower... not to change.


Dave.

Anonymous said...

HI,AS A FATHER OF THE 4 YEARS OLD AUTISTIC CHILD I MUST SAY THAT OUR SON STOPED TO INJURE HIMSELF AFTER SPECIAL DIET AND HE IS IMPROVING MORE.. YARI PRAGUE,CZECH REPUBLIC

Anonymous said...

I have never heard of advocates saying that somehow you should just let your child harm themselves. But an autistic brain is a different brain and all the talk of "cure" worries me.

A recognized difference of brain types doesn't mean a child will raise itself. It's still the parents job to help them be happy within their mind and soul.

How do you do that? By respecting their differences as you should respect an artist vs an athlete. If a child isn't into sports you don't try to make it their only interest.

If a brain isn't into social cues and easy language you don't keep trying to force it into being an expert at those things.

Of course, just like an artistic child will benefit from a casual soccer course an autistic child can benefit from a variety of therapies. (I'm a big fan of ABA myself.)

I wouldn't change my son's mind for anything in the world. I love the way it cuts through crap and sees things in a different way than neurotypical. And this is what advocates are saying, as I understnad it: An autistic person isn't diseased or broken, just different and there should be room in society for all of us.

Autism Reality NB said...

anon 3:31

I appreciate the civility with which you expressed your opinions, although I do not share those opinions.

Autism is a disorder recognized as such by any serious medical or health care professional. It also seems obvious to me that a person with almost no communication skills and who lacks understanding of the dangers posed by such every day elements of the environment as automobiles and broken glass suffer from a disorder - a disability.

As a parent I do have the duty to prevent myself from engaging in self injurious and dangerous behavior. I also have to try to communicate with him. Unlike some celebrity autistic persons my son does not communicate over the internet or by means of technology of any kind. He has learned some language, reading and communication skills by means of ABA intervention. These skill developments have also reduced but not eliminated behavior dangerous to my son and others including his family members.

We continue to try and improve his communication and reduce problem behaviors using ABA. This is exactly what the "Neurodiverse" advocates oppose. The hostility expressed by the Neurodiverse movement toward parents attempting to assist their own children, whether it is called curing or educating those children, is readily ascertainable on the internet.

Autism Reality NB said...

anon 3:31

Typo

I edited my post to read "As a parent I do have the duty to prevent mySELF from engaging in self injurious and dangerous behavior. " That should have said "to prevent my SON ..."

Bob King said...

I'm on the spectrum myself - and rather more toward the "disabled" end than I would like.

A few things made me smile here - I recall being fascinated by the beauty of broken auto glass, piles of glittery optical magic. Insert panicked parental reaction here, with a side order of "why are you playing with trash?"

Two interesting factoids here - despite understanding perfectly that my parents saw the glass as trash, I did not - I saw, and still see it as "a thing in itself;" instead of the "dangerous remains of something." This is important - I have either the ability or the disability of seeing and reacting to things outside of an emotional context. Whether it's an ability or disability usually depends on by ability to express what I see in a way neurotypicals find acceptable, or upon my ability to keep my observations to myself. But to me, a thing is a thing and an act is an act, taboos, squicks, disgust and revulsion toward certain acts, things and social contexts is something I have to process intellectually - even if it's MY instinctive revulsion! (Which, by the way, strikes even me as weird.)

Second, I handled all those razor-sharp cubical shards without even the slightest cut, yet I'm quite sure my mother, at least, would have considered it at least potentially "self-injurious," because (I think), for her, handling sharp glass was a taboo from childhood she was passing along.

Your child's millage may vary, but consider that it's possible that *in some cases,* what you see as "self-injurious" behavior is simply fascination with something that his fine motor skills are not up to handling safely.

(And no, I'm not speaking of head-banging or other explicitly self-injurious behaviors. though that may be a means of releasing calming endorphins. In this case, try "skritch mitts." Feel free to email me if that reference doesn't make sense.)

Tools and techniques (in the case of broken glass, protective gloves) would be one approach. Another would be to put some of that glass into a sealed container that he can safely examine. Perhaps make a sun-catcher with him, by gluing the squares to a sheet of acrylic.

Speaking personally, my difficulty with the "oh, horrors, my child has autism" movement is NOT that I'm opposed to helping autistic children function in society to the degree they can. We have and do, and have for a very, very long time indeed.

In fact, my reason is the complete opposite - my direct, personal experience is that "help" that comes from viewpoint that an autistic is just an "impaired neurotypical" is in the "useless to dangerous" range, because the advice depends on being able to perceive and appropriately respond to subtle behavioral clues I cannot, and while I can "fake" certain things, I cannot engage in an emotional sub textual dialog in any way that is likely to have a good outcome. It's like teaching a blind man to drive - an inherently bad idea, when everything about driving is designed around visual perception.

In my experience, people who do not know that I am wired differently are more likely to freak out on me when I do a poor or clueless imitation of their behavior than if I'm upfront about who I am, and behave in a way that is simply designed to not step on *their* behavioral triggers. If I just say, "I'm on the autistic spectrum," I probably won't give you the cues you expect and I won't get offended if you ask me why not, things go much better. Or, if my feeling is that those I'm with would not react well to such "oversharing," I simply behave as an arrogant, ivory-tower knowitall would - and that is also acceptable. It is a social sterotype I can fulfill; people react to me in ways that seem good to them and which do not irritate me as much, so it all works out.

Oh, and the other thing - anyone bringing MY child home in restraints would either be answering some very directly worded questions about the surrounding circumstances at an emergency IEP with "The Advocate from Hell" OR answering those same questions in court.

The usual reason for aspie/autistic rage is that some children, and indeed, some teachers cannot refrain from playing "poke the aspie." Personally, I think that odious habit should be discouraged - and I'm surprisingly sanguine about the possibility of rude people suffering some consequential "discomfort."

My wife - the special educator - would sigh, "Oh, Bob," at this moment. But I will stand on my aspie sensiblities here. Non-autistics expect me to read them, and suffer for my failures. Often those consequences are violent and painful - and usually ignored by authority figures.

Sauce for the goose is sauce for the gander. Accept that poking me is dangerous - and that even nonverbal autistics will likely/are capable of providing signs well before becoming violent.

The problem is that our body language - hell, often explicit verbal communication - is ignored or rejected with things like "don't be a baby" or "just suck it up."

When I say something is an issue for me, generally I HAVE been sucking it up, and I'm full. One of the biggest communication issues with, well, the population of autistics I'm personally familiar with is

1) Noticing and processing discomfort, pain or stress as something that requires action.
2) Using words to express a need for action, if avoidance will not suffice.

To the extent they do provide those signs, they should be respected. To the extent they do not try to communicate before choosing violence, well, now, that's a different issue. Nobody in this world gets to freak out for free.

But there is a double standard for autistics, and in many cases, it's not reasonably possible for us to perform at a HIGHER level of reasoned behavior than the neurotypicals around us in an environment that probably contains inherent stressors that neurotypical wetware can filter out far better.

That inability to filter and ignore stressful circumstances, behaviors and environments is part and parcel of how my mind works - but it's got a huge downside. There is no escaping that, and coping skills only help so much. At some point, accept that whether or not you can understand my need to leave, accept that if that causes you to stand between me and the door, you will have footprints upon your person.

At that point, I will be in fight-or-flight mode, and in no sense responsible for my actions in any rational sense.

As an adult, I'm far more able to avoid such circumstances in the first place and have not "suffered" from the loss in any way my parents would have predicted. To me, my antisocial nature and my "inability to cultivate relationships" is something I do not miss. I sometimes wonder what it would be like to have a wide circle of social contacts, it certainly limits my choices and access, and I have had to develop acceptable work-arounds and adaptations, so that I can meet my needs in ways that do not risk my "going postal."

And finally - though I'm well aware that many would consider me delusional for saying this, not understanding my criteria for saying so, I've had an immensely rich and rewarding life so far, and have every intention of continuing as I am, with the expectation of more and greater rewards.

There are a lot of us - as people are starting to discover - who managed to grow up and find their niches without benefit of "help" that recognized that our "problem" was autism. I refer to myself as a "free range aspie."

So, while you cannot realistically expect your son to grow up to be just like you, to think like you, to understand the world as you do, there is a lot to suggest that he can be a remarkable person and a valued member of society on his own terms, and that his differences are an inherent part of this package.

Most importantly, he needs to learn to exploit his strengths as a means of compensating for his disadvantages, if for no other reason than the obvious; we autistics DO take some work to put up with - it helps a great deal if we are worth the price we ask.

Fortunately - for the degree of human interaction we actually need - this is not as difficult as you might think.