Sunday, July 17, 2016

What does it feel like now that I have two autistic kids?

I wanted to explain what it feels like now that not only just one but both of my children are diagnosed as being on the autism spectrum.  It is... complicated.

I believe that I am a fully valid person whose being on the autism spectrum is fully part of who I am.  Some days are harder to feel that way because I have to fight to believe in myself.  As I told someone not long ago, I wish I had known I was on the autism spectrum earlier in life so I could have understood why I felt so different from other people and not just like some kind of unexplainable freak.  As an extension of fighting to believe in myself, I have to believe in my children no matter whether they are autistic or not.  Part of me wishes their life didn't have to be as complicated as mine.  But the bigger part of me believes just as much as I believed when my wife and I decided to have children that the kind of life I represent deserved to have a chance to be lived.  We always knew genetically we had a high chance of having autistic children.  That being said, I never would have intentionally tried to have all of my offspring be autistic if I could.  I would have been perfectly happy to see what a non autistic "version" of me could have been like through my offspring.  Now I know that won't happen.  Life is hard enough we don't expect to have any more children and both of my kids are autistic.  While it is easy to say the words "I accept you no matter what" in reality the act of acceptance is tied to the complicated idea of accepting myself.  There is nothing simple about it.

How I feel about my son being diagnosed is so closely tied to how I feel about myself that it is almost impossible for me to approach the subject with other people without including that context.  The thing is, I mostly "pass" as normal and get some privilege from being able to do so.  Whenever I disclose that I am on the spectrum there is always the possibility that I'll run into whatever bizarre stereotypes people have or even direct or subtle bigotry and ablism.  Every single time a person on the spectrum commits an act of notable public violence the news can't help sensationalizing their diagnosis as an explanation for their violence regardless of the fact that autistics are statistically no more violent or prone to criminality than other people.  I can't just walk into my new job and announce "Hello, I'm new here an I have Asperger Syndrome" without wondering whether a coworker will start to fear that I'm a mass murderer waiting to happen or whether my manager will start to view my performance with a biased pessimism based on the assumption that a disabled worker could never be as good of a contributor as a non disabled one.  As a result, even trying to talk about how Lionel has been diagnosed and how I feel about it is a socially tricky situation to navigate.  Unfortunately to be an effective advocate for my sons I need to learn to navigate these kinds of situations.  I already had that problem once over, now I have it twice.

Now I have to confront the world of treatments.  With Taliesin his main problem has always been that social interactions were so frightening that he couldn't talk except to us in specific situations, or in other words selective mutism.  Working with speech therapists in multiple settings and of course just letting time pass has done wonders and he is making great strides to being able to talk to a larger and larger sphere of people.  While he has other problems as well they are not as daunting to us personally.  We've never felt a need to pursue any dramatic scale treatment program.  Mostly he is just fine the way he is as a quirky kid and we could feel ok pursuing narrow treatments for narrow problems.  Lionel, on the other hand, is more "severely" impacted.  I hate using such language often expressed as whether the autistic person is "high functioning" and "low functioning" because these terms generally are used in popular language to mean whether the observer using such phrases is immediately aware of the problems the autistic person has in their life without having to guess much.  Taliesin is not "obvious" if you don't see him in a setting where he is having problems talking, but has problems in his life that I won't elaborate on that are stereotypical of "low functioning" kids even though most people would call him "high functioning" because they can't see the problems.  Lionel, on the other hand, has issues that immediately stand out as what would popularly be called "low functioning" including a delay or abnormality in his ability to use language at a level developmentally appropriate for his age and rather severe issues with trouble paying attention.  In any case, there is a more obvious need to get him a broader scale treatment program.  And, for the first time, we actually have insurance coverage that will help us do that.  In a way is wonderful.  In a way it is a daunting prospect filled not only with questions of how to find the providers, find the time, and find the money but also with the complicated tasks of avoiding the ethical pitfalls of how our culture deals with the treatment of autism.

Therapies for autism have a sullied history.  While I haven't been exposed to many of them first hand since I wasn't diagnosed till I was an adult I've been a part of the autism community enough to learn about the skeletons in the closet.  There are plenty of dead ends filled with fads and quack doctors selling hope instead of medicine.  Some treatment protocols in the past openly advocated for violence and abuse against the children in the name of "curing" the symptoms through behaviorism based psychological interventions.  While generally such dramatic violations of people's dignity are looked down upon now the ghosts of the past are not completely gone.  There are still treatment centers out there that will openly advocate for the use of aversive's and punishments to try to reprogram behaviors.  And even program that don't "intentionally" inflict harm and claim to only practice positive reinforcement can be tainted.  Putting children into situations where they are highly pressured to not show the symptoms that would let people know they are disabled can be extremely distressing- such as being required to suppress stimming or required to show gestures of affection on command with strangers or required to show the appropriate patterns of eye contact no matter how personally distressing.  Once a service provider who had to decide what version of therapy program to run told me that they personally struggled to offer such a program because forcing children into such high stress situations made them obviously miserable.  To an extent valid medicine can hurt just like an injection for a vaccine is still valid medicine even though it hurts.  But when therapies can easily become side tracked by the question of making the child "look normal" instead of trying to help them adaptively interact with the world the infliction of distress and suffering can become questionable.  Another pitfall can be that aggressive service providers and desperate parents will often try to set up treatment protocols calling for extremely long therapy sessions- perhaps longer than 8 hours a day- taking over the life of everyone involved in an act of desperation more than because it is evidence based.  Another pitfall associated with these marathon training programs is that in order to try and make the positive reinforcement training as powerful as possible the service provider will work with the parent to systematically identify everything the child enjoys or takes personal pleasure from- and then remove all access to those things so that the only way the child can gain access to anything they enjoy in life is as a reward for achievements in therapy.  Such a program might technically be positive reinforcement only but is performed in a context of abusively restricting access to anything the child enjoys in life.  I've read that autistics who grew up in such treatment programs learn to try to hide anything that they take pleasure in to the point where as adults the normal social act of someone asking simple questions about what they enjoy is an extreme invasion of their need for privacy that developed as a defense mechanism against their parents and service providers trying to deny them free access to anything that they enjoyed.  Another pitfall of therapy programs is that in order to try to teach "normal" verbal communication it is often suggested that parents refuse to acknowledge any attempts at communication unless a child can reframe the message into "normal" speech.  The problem is that it is completely an unknown factor whether an autistic with a language delay will ever comfortably develop a "normal" speech ability.  Refusing to communicate except through "normal" speech can become a pervasive refusal to communicate or to treat any adaptive attempts to communicate as inherently invalid.  To a point insisting on verbal communication helps develop verbal skills.  Past that point its an abusive refusal to respect the human dignity of the child because they aren't normal.  There is no easy answer as to what is the right thing to do.

On top of it all of the ethical questions and social pitfalls to avoid we simply don't have much spare  time or money to use to pursue treatments.  Even getting Taliesin the limited services he has had has been a real strain.  The entire prospect is honestly daunting and leaves me feeling tired.

After all is said and done, Lionel is still the same person he was before the diagnosis.  He is still the little guy who obsessively loves large trucks, dinosaurs, and trains.  He is still the affectionate little guy who can climb almost anything in the house and on some days loves his broccoli almost as much as he does chocolate cake.  He is still the little odd ball who has for a long time phrased practically all of his questions as statements and frequently communicates through tangential references to his favorite books and movies.  We are enough of an autism family that the diagnosis grants us less an understanding of Lionel which we already had and more gave us the passport to helping the outside world understand who he was, give him the supports that are his due, and have a chance to accept who he is.  So in a way perhaps I shouldn't feel different than I did before.  But there is something in the nature of naming a problem that makes you face it with an urgency you could avoid before.  I could just wish it weren't so complicated.

1 comment:

Whitaker said...

Well said, Justin.