Speaking for Those Who Cannot Speak

Or is it speaking for those who cannot articulate; or acting for those who cannot speak; or just plain raising a child? Which direction am I/should I go with regards to the betterment of my young autistic children?

Are we experimenting with biomed (obviously), ABA (possibly), speech, OT, physical therapies (could be)? We have this unprecedented opportunity with early diagnosis to figure out what is the best way for an autistic child to learn. Why shouldn't we try or why (better yet what or when) is it wrong to try? Aren't we trying to see what autistics need early in life, when they could most use a way to communicate, control their issues of concentration, help their functionality within this neurotypical world? I feel we are at square one with autism therapy/training and parents of young uns' are stuck holding the research bag.

It goes to my original shock of the neurodiverse attage of understanding without changing. Even the most fervent of the 'diverse' of the neurodiverse must agree that something should be done for a young autistic child, the issue is always what. What is invasive? I see a lot of talk around the objections to what is deemed as trying to make a child look and act more 'normal'; but for me, it's a blurry line between normalcy and improving a child's condition. My example is my 3 year old, Grace, is having trouble with transition. I think transition is not necessarily an autistic trait but it seems like the work to get Grace to transition easier is made more difficult by her ASD tendencies of wanting sameness and control over her world. Writing that I am again confronted by what is 'normal', what is pushing too hard, what is a tantrum of a three year old vs what is an outcropping of an autistic tendency.

It's back to 'difficult to get it'; how do we take these therapies, these studies, the politics, the day to day existence and desire to make things 'easy' and mold them into a cohesive attack (oops, thorry, used a military term) a cohesive strategy of giving my children what they need vs what is best for me? Kinda between a rock and a hard place, dancing the line between all of what the schools and science says should be done vs what an autistic adult may consider crossing the line into 'normalcy indoctrination'.

The people looking at the neurodiverse movement have to see the symbiosis between the autistic parents (parents of autistics) and the autistic adults. Autistic adults need to look at the opportunity to assist the next generation with advice and guidance; the parents need to look at the opportunity to change the views of the schools and the system to a view of assisting the growth of this generation vs societies attempt to create NTND's.

Why does Hamlet's soliloquy seem to keep popping in my mind with regard to the decisions that I need (want, could) make for my children:

Thus conscience does make cowards of us all,
And thus the native hue of resolution Is sicklied o'er with the pale cast of thought,
And enterprise of great pitch and moment
With this regard their currents turn awry And lose the name of action.

We are in a position to do something (that clock is always ticking in the back of my mind,though I try not to listen). It is a great noise coming from all angles about what to do, all we really want is what's best for them. But is it action or inaction that we should be doing? Is it their balance or ours that we are seeking?

It's Not Easy to 'Get It'

I just watched a You Tube video by Christschool and I agree with everything said on it about how non autistics can be allies in the neurodiverse movement. But it got me to reflect on the journey that I have taken to get to that position. It's not an easy thing for a neurotypical parent of an autistic child to arrive at a place where they understand the neurodiverse movement; I won't say truly understand because, being on the outside looking in, you cannot truly appreciate the situation autistics are in, kinda like a white person trying to get in the shoes of a black person. We can empathize, but we can't really understand.

It's real easy to fall into despair when you first receive your child's diagnosis of autism. There's the 'you have terminal cancer' attitude you get from the doctor. The shock that your initial dreams for you child have been shattered. That your life has taken this bizarre left turn, and the road ahead is dark and foreboding. Unless you have disability in your immediate family, nothing can prepare you for this.

Getting through my denial portion of grief, I ran headlong into anger. I remember anger at my first brushes with people who actually saw autism as something more that just a nightmare that I had just been thrown into. "How can you actually want to keep THEM the way they ARE?" I said to my wife and posted several things to that effect on some boards. The idea of not wanting a cure for autism was repulsive to me. The people advocating this position were abhorrent and uncaring of my daughter's plight. Being told that I was similarly repugnant for looking so hard to 'cure' her of this 'disease' further confirmed my suspicions that their souls we headed for eternal damnation.

Then Amanda Baggs' Getting The Truth Out photo essay hit me square between the eyes. I followed the link off of a board and went through the first half of the slide show which ran along pretty close to my perceptions at the time. How horrible; what CAN we do to FIX her? The second half, and the sudden juxtaposition of advocator vs advocatee, caught me so off guard that there was a paradigm shift in my thoughts of what I was doing and why I was doing it. I admit that I did not get all the subtleties being put forth as far as advocacy, but I did get the point that there is more to my child's disorder that something that needed to be defeated.

I gradually went from exorcising the autistic beast from my child to discovering what I could do to help her and myself deal with the issues that would be there for the rest of our lives. By the time we discovered our youngest was probably on the spectrum as well, I had a different perspective on what it meant. I will not deny that thoughts of a 'normal' life are still not appealing; but I no longer view 'normal' normally anymore.

My moment of clarity in all this is that parents have to deal with this new and different life; to my children, this is the only life that they will ever know. There is no grieving process for them. I guess that's where there is a difference in advocacy between the autistic and the parent of an autistic. Parents have to deal with the loss and change; in that sense we have a certain core of selfishness, no matter how much we sacrifice for our kids. We're mourning what WE'VE lost, not what THEY'VE lost. Autistic children haven't lost anything, but they'll need parents' help to gain everything. The sooner I can shake off that life that has never nor will never occur, the sooner we can get to work.

ND vs NT...WTF???

As many of you are aware, my 'hangout' on the internet, if you will, has been a message board called AutismWeb. My wife and I have been registered on the board since June of 2005 shortly before we moved (someday I should document our M*A*S*H-like move in the summer of '05). Linda has been off of the board recently onto other internet quests, I spent much of the time arguing the finer points on the Media and Politics side.

I have watched a transformation of AutismWeb (and myself to a certain extent) from an almost exclusively biomedical bastion to becoming more balanced, for lack of a better word, in its collective thinking. It was a bloody bloody battle in the Politics group about six months to a year ago, and skirmishes still break out from time to time. But, science and data-backing have become the norm on the Media and Politics side.

This critical thinking comes at a price however; the price that anything that has a lack of full scientifically studied backing, will be attacked and sometimes mocked. I will grant you that some therapies are more dangerous than others; some are less 'proven'. But these biomed parents are betting a healthy amount of time money and effort on these therapies. To have them cast aside as unproven and therefore unworthy is an affront to their belief systems.

I finally got to that word 'belief'. At times, I watch the fights on the boards and liken them to almost religious fervor; or should I say, the 'faith'-based biomed vs the rationalists, doubting the existence of a supreme 'cure' being. If you've ever been in an argument with a friend about religion, it either was not a real argument or you no longer have a friend. Attacking one's religion is not something that is taken lightly, the concept of cure is somewhat at the heart of the issue.

The Neurodiverse consider the word 'cure' as an assault against who they are. Pretty reasonable request, to have the essence of who you are NOT be considered a disease to be erradicated. The perception of having a war declared almost against your very existence could be very unnerving.

Being one who has wound up somewhere on the border of this war zone, in the no-man's land, I have a somewhat unique view of both sides, their weeknesses and strengths. Why people who have so much in common yet seem to be diametrically opposed to one another is beyond me. It's like those at the former Berlin Wall or those fighting in the Middle or near Far-east. We pit brother against brother, relative against relative. The two sides are so much alike. But each pushes the others hot buttons, we have two different ideologies facing off.

I guess all I'm saying is "can't we all just get along"? We have so much to fight for: better services; discrimination; research. But, I know like Palestinians and Jews; Indians and Pakistanies; North and South; we have a long way to go toward better understanding

AUTISM AS AN HISTORIC STRUGGLE FOR RIGHTS

It just occurred to me that for the first time in history, a group with literally, in some cases, no voice is gathering together in, for the most part, physically no place, for their rights to exist as individuals and a group.

Never has the ability ever existed for people with a communication and social disorder to band together. With women's rights, rights for African Americans and even gay rights there was mobility, numbers, and vocality; this time, the revolution will be blogged. With this movement, I almost envision a dispassionate Stephan Hawkins-like voice giving a passionately written speech. Not a wildly cheering crowd but a potentially deafeningly precise voice at whatever would be genuinely considered harmful to their existence. It's not hard to hear the passion in many of the voices of the autistics, even if it only can be delivered in the written form.

It is surreal that a group of people almost literally discovered and 'incorporated' a little more than 20 years ago with the DSM III criteria, has taken the tool of the day, the ONLY media they could have gathered together in and achieved levels of understanding and comprehension literally impossible just a few years earlier. They (we) have discovered each other; formed groups, formed opinions, discovered common symptoms, dreams, abilities and indignations. Parents found a way to network; Autistics found a voice, both individually and as a group.

Being a parent of young autistic children, I feel like an outsider, watching what's going on but not yet affected by it. But to steal someone else's phrase: if you're watching it, you're part of it; if you're close enough to see it, you're in it. I understand the indignation that many autistics and their families feel about the language being used to describe autism and what should be done. Words like: combating, War, Defeat, Cure, Disease certainly do not invoke a sense of well being when you are in the 'crosshairs' of what they are 'defeating'.

I have been defending the language with something akin to 'the ends justify the means'. That those using the language are only trying to help autism get into the mainstream media and mainstream money. With the advent of the combating Autism Act and that Autism Speaks has gained national notoriety, it seems this has been accomplished. Now is an opportune time to attempt to take hold of the reigns from those who may have been misguided or single minded in their quest to 'save' their children from unseen enemies.

While my sentiments have been with the autistic 'pride', I shall endeavor in the future to be more vocal in the attack of inflammatory language and pressure those large organizations to change their attitude and rhetoric. It's not a war, it's their life...
Bill

AUTISM BLUEPRINT

I made a comment today on the AutismWeb board and I wanted to expand on it a little. The discussion was along the lines of "If you could cure autism with a pill". I'm going to plagiarism my own stuff:

"The 'magic pill' certainly puts a different spin on it all. Implications of changing who they are at the core is disturbing (especially in the genetic manipulation category). I would prefer to work with the 'architect plans' we were given and use the best materials and find the flaws that can be corrected as we build. I would hate to think that I messed with the 'Frank Lloyd Wright' plans to come up with a cookie cutter ranch..."

I liked the Frank Lloyd Wright reference and, as I thought about it, it had more and more connections to my life dealing with a autistic daughter:

• Frank Lloyd Wright buildings went notoriously overbudget, those of dealing with the spectrum, nuff said
• Buildings were often leaky...Again...spectrum...nuff said
• Frank himself, if I recall, was notoriously tough to deal with, not to the extent of many autistics.
• He made the most of the space he had... What was that one house called? Waterfall or something like that. I imagine my daughter has created a beautiful personal space; even if it has only enough room for herself and her fingers in front of her face! She's letting us visit more and more lately.
• His buildings are arguably some of the most beautiful in the modern age. You KNOW MY daughter IS the most beautiful in the modern age. Actually, its 4 way tie with the other girls in the house.

Alright, turned sappy, thanks for listening,

Bill

WHY DO AUTISTIC KIDS HATE THEIR PARENTS?

Maybe the question should be why do ASD people hate parents of autistic children? Or should I go the other way and just say why do kids hate their parents? My oldest being 11, I am only now learning recently of this 'kids hate their parents' syndrome. Being the parent of an autistic 3 year old (as well as four other children of various NT ranges of disfunctionality), I find the level of venom coming from various sources disturbing. Being a parent of an autistic child who chooses to try various biomedical approaches, I am feeling as if I have to explain EVERYTHING I do for my child. I assure you, nothing I am doing with my child is life threatening nor life altering (nor do I expect it to). All I am looking for is better responses to her various therapies.
I guess I WAS looking for a "cure" at one point, but my knowledge and expectations have shifted from that of finding the 'antibiotic' to finding the right type of therapies to reach her and have her be able to reach me. Why should vitamins and diet be met with such a backlash of anger though? No need to answer that, I know who the anger is mostly pointed at, I just wonder why it flows down to the parents.
Which brings me back to my title. Do you think my Liv is going to grow up to hate what I tried to do for her? I certainly hope she has the presence to formulate and to express it to me!

Sorry for a disappointing inaugural post. I just felt that if I post graffitti on all your blogs, that you have the opportunity to draw on my walls...Bill