Christian Wright and Autism Speaks

You can click above to watch a trailer of Autism Speaks' new film, Sounding the Alarm.  The film is now available on Netflix for free if you are a subscriber.  Like all things in the world of Autism Speaks, it is designed to educate and inform, and likely make neurodiversity autistic self-advocates get pissed off and write another scathing anti-Autism Speaks post on their blogs.

I have written before that the autism spectrum is now so wide it has become meaningless, pitting the parents and friends of people who have very severe autism against the high functioning autistics of ASAN who function quite fine in society, thank you very much.  Although diagnostically, severe and very mild autism share features, the day-to-day reality is so different that we may as well be talking about two completely separate disorders (and therein lies the rub - for the neurodiverse crowd, there is no disorder, just a difference.)

Most parents of children with severe autism are sympathetic and supportive of Autism Speaks, because although they do good work for everyone on the spectrum, they tend to focus on the families and people with severe autism and present that reality.  I do not particularly understand why this ticks the higher-functioning crowd off, because if your autism is not causing you disability (and I would argue if it does not, you don't have it according to the DSM-V), why should you care other than the "autism" label being tainted with severe autism realities?

Many people criticize how Autism Speaks uses their funding and for good reason.  They spend too much money on research and salaries and not enough on communities and individuals.  This is changing, but not quickly enough.  However, one cannot dismiss the awareness and education Autism Speaks has brought to the world, and this is good enough for people to support them, in my mind.

Christian Wright has severe autism, and as a result, his grandparents founded Autism Speaks.  Although I do not celebrate how much autism impacts Christian's life or that of his parents or grandparents, I do think his life story so far can be very guilt-relieving for many parents.  Christian was diagnosed early, and despite the best care money can buy, including ABA, speech therapy, OT, and DAN protocols, he remains severely autistic, non-verbal (he uses speech output devices) and has behaviour challenges.  Although early intervention and treatment works for all children to some degree, there is huge variation on response (due to cognitive ability).  What I like best about Christian's story is that you can do everything right as a parent and still have a kid with severe autism.  On the other hand, a child could receive minimal treatment and make huge gains, relative to someone like Christian.

Does this mean autism treatment is meaningless?  Not at all.  But it does bring wide attention to the fact that autism is a lifelong disorder for most, and severe autism may not be ameliorated in a big way by treatment.  Every gain made in autism treatment is worth fighting for, absolutely, but we must also be prepared to give a meaningful life for those who have severe autism, and recognize that every skill gained is a gift.  This is what Christian's life shows to me at least, and it is a message we need to hear - not just the feel good autism stories about brilliant quirky young men and women.  Those stories are indeed worth telling, but you only need to talk to families with both sides of the spectrum in their houses to understand that they are not the same realities.  People need to understand this, and I am happy Autism Speaks is getting that message out.

National Autism Strategy is a Distraction

My fellow blogger over at Autism in New Brunswick is a strong advocate of what he calls a "National Autism Strategy" for Canadians.  In the latest post on the topic, he mentions four key points for such a strategy:

a.) the development, in cooperation with provincial-territorial governments, of evidence based standards for the diagnosis and treatment of autism spectrum disorder;

b.) the development, in cooperation with provincial governments, of innovative funding methods for the care of those with autism spectrum disorder;

c.) consulting with provincial-territorial governments and other stakeholders on the requirements of implementing a national surveillance program for autism spectrum disorder;

d.) the provision of additional federal funding for health research into autism spectrum disorder.

This is not news; many people have advocated for this strategy in the past, and some will advocate for in the future.  I personally feel pushing this politically is a waste of time and amounts to us chasing our own tails when there are real advocacy issues and pursuits we could be tackling.

First, a little lesson in Canadian politics.  Canada is a federation, which means that there is a division of powers between the federal (national) government, and the sub-national governments, the provinces.  Canada's constitution guarantees that both governments can legislate in their respective jurisdictions.  When there is disagreement, the Supreme Court of Canada usually must rule to determine which government may legislate (this happens more often then you would think).  There are also many areas of shared jurisdiction, which makes some legislation fuzzy in terms of validity as per the Constitution.

Autism Services in Canada fall under three main areas:
1.  Health
2.  Education
3.  Social Services

All three of these areas fall under almost exclusive provincial jurisdiction (the exceptions being federal monitoring and approval of drugs and treatments and the health, education and social services of on reserve native Canadians).  In Canada, although the federal government approves drugs and other health treatments, the provinces are responsible for regulation of health professions and which treatments are covered under provincial health care.  Thus, from an autism services perspective, this is largely an area of provincial jurisdiction (and I would say mostly exclusively).

Some people argue the federal government could use its spending powers to implement a National Autism Strategy, but I would argue all this would do is setup the federal government as a transfer payment agency with zero accountability on how that money is spent.  While I would enthusiastically support direct federal transfers to people with disabilities including autism, this is not a National Strategy, it's just more money.  There are no guarantees of new outcomes.

I will also mention that I held these views before I moved to Alberta and my presence in this province does not alter my opinion.  While some may say it is nice for me to have this opinion in the province that provides by far the best services in Canada, I'll remind you we moved to get here rather than wrestle with the Ontario government.  If you are in Canada, there is no reason you could not do the same.

Now, let's look at the four items proposed above on what would make a true "National Autism Strategy":

Regarding Evidence-Based Standards for Diagnosis and Treatment
There is already lots of evidence and reports on what is considered evidence-based practice.  I don't think we need to make an official Canadian document to espouse what is already well known and described in the scientific literature.  Any standards created would add nothing to the existing literature and could be largely ignored by the provinces, since diagnosis and treatment are in the health, education and social services areas of government and thus not within the federal government's ability to legislate.

Innovative Funding Methods
I am not sure if this is code for "transfer more money from the federal government to the provinces" or let's talk about best practices for funding autism services using the charitable sector.  While this is a good idea, I am not sure we need to pay a bunch of people a lot of money to do this when there are great examples of many organizations doing good things across Canada.  Why do we need a National Strategy to tell us this information when it is already available?  I do think there is some room here for funding methods in more remote regions of the country but this problem is not unique to autism.

National Surveillance Program
I agree it is odd that Public Health Canada does not track statistics on autism, and this actually in their area of jurisdiction.  So okay, let's do that.  But this alone is not a National Strategy on Autism, it's just a policy correction.

Federal Funding for Autism Research
Translation:  Please give more money for autism research oh rich and powerful federal government.  Okay, fine.  But again, not a strategy people, just a policy variation.  Who is not asking the federal government for research money?

Lastly, let's look at one area for which we do have a national strategy - mental health.  The strategy itself gives many "priorities", but all this really amounts to is a laundry list of asks to Canada's provincial governments.  There is nothing here that will practically change the lives of people with mental health issues.  It's a useful document, but one that will be shelved like all others with some of the recommendations implemented by some provinces.  For a national strategy, it is not effecting any national standards in mental health.  Why is this?  Because it can't.  Mental health, like autism, is largely in provincial jurisdiction.  Many provinces have local boards or authorities running programs for both autism and mental health so services are not even consistent across provinces let alone nationally.

Even assuming you could create a strategy and have it implemented by the federal government there is no way all Canadian provinces would accept it and implement it.  It's a fantasy.  Could we change this?  Maybe. We could attempt to change the constitution but we all know how that went last time.  Most constitutional changes in Canada attempt to weaken, not strengthen, the position of the federal government anyway.

Real advocacy in Canada could be a national effort, but it must be directed at the provincial level.  The provinces can legislate in these areas and the provinces have responsibility for them.  A National Strategy for Autism is just a distraction for the real advocacy we need in Canada.

New perspectives on leisure

So what do you like to do for fun?  When my kids were younger and I was still trying to "recover" them, what they needed to do for fun was what other typical kids their age would be doing for fun.  After all, if it is typical, then it allows for possible social opportunities.  It also makes them appear more normal, and recovery is close to normal, no?

When I was a kid, I was very much into video games.  Today, you might read that sentence and barely give it notice - what boy isn't into video games?  But this was in the 1980s, and back then, that wasn't so common for boys, and especially not so common for fathers of boys.  My Dad, God bless him, tried really hard to show some interest, but he just wasn't, and it was obvious.  He liked sports and the outdoors - fishing, camping, and the like.  While I enjoyed the outdoors with him as a boy I never developed the skills needed for his more challenging trips as a young man, and while I certainly enjoy watching an odd hockey game, sports buff I ain't - not even close.  He also is a very intelligent man, so to some degree he enjoyed debate and discussion on ideas, and there I could provide some challenge for him.

My point here is that despite my interests not being typical of boys at that time, they were my own interests.  Strange interests tend to result in some social isolation, because let's be honest - especially for men, relationships form around common interests.  The fewer the number of people who share your interests, the smaller the pool of people is with whom you can form friendships.

I wanted my kids to have typical interests so they could have friendships and be more like everyone else.  But as time has passed, I see I am fighting a losing battle (much like my Dad probably did).  What people do for fun has to be intrinsically fun for them.  As parents, we can introduce new activities and possibilities.  Some of those will be shot down (in my case, almost all of them), but it does not mean we should stop trying, nor does it mean we should take it personally when it is shot down.

Case in point:  puzzles.  Both kids have been introduced to puzzles; A had programming around this and T has been shown numerous times.  Both kids don't like puzzles much.  They don't mind the iPad versions, and occasionally I can even get A to sit and do one with me when she wants, but mostly, she doesn't like them.  Here's the rub:  how many adults do puzzles?  Not me, no thanks Jack.  Puzzles are a task to me.  Yet for some people they are quite relaxing.  I think most people do puzzles as children and move on.

I have come to the point of realizing that while I need to constantly introduce and teach leisure skills, I have to stop fighting their natural interests and instead work with them.  Yes, both kids play with some toys appropriately (T more than A), but A also thinks it's super exciting to watch things fall.  New this week:  place broom on deck.  Push broom over, flap at result, and repeat.  The old me would have said, "this is perseveration, let us redirect this activity."  New me says, "Clearly she is enjoying herself, this is pretty funny to watch."  T might arrange his letters a certain way and touch them, or watch a video at various volumes and laugh his head off.  Yes, it's weird, but to him, it's fun.

My rules on leisure activities have drastically changed:

• Activities cannot involve danger or injury to the kids, others, or property.
• Activities cannot become so rigid that they interfere with daily functioning (case in point:  T's letters were banished to his room because he got upset if we stepped on them - they are big foam letters.  Sorry kid.)
• Activities cannot be so solitary that we cannot join in - note this does not mean we always have to, it just means I have to be able to add some social component to it where we do it together.

So yeah - I suppose the Dad conversation is a bit different ... 

Question:  "What'd you do with the kids?" 

Answers:
"A and I had a blast rolling brooms and pots off the deck.  It's hilarious."
"T and I broke our eardrums listening to TuTiTu videos.  It's fun being somewhat deaf.  Only for a bit though."

And yeah, most Dads just look at me because what can you really say to that?  But the ones who know us best just say, "Sounds cool.  Glad you guys had fun."

They did.  They had a blast doing things their own way.  And isn't that what leisure activities are for?  Yeah, I get to suffer through it, but what parent doesn't?  If you want to have a relationship with someone you have to join them in their common interests, and with autism, the reciprocity of interests isn't very high.  So it's more work for us, but in the end, we get better quality relationships.  It's worth it.  Most days.

The Power of Observation

This is a Hoberman Sphere.  A got this for Christmas.  She's been eying it for some time now at the store.  It's been out, she's played with it, she likes it.  We were pretty pumped about this gift at Christmas and so was she.

Recently, while T and her were playing with it (and me as well), something interesting happened.  Bear with me - this is quite subtle.  T watched me spin the sphere and then copied it.  After several more repetitions of this across a few days, A also began spinning the sphere.  This is the first time ever that we have ever since A demonstrate observational learning.  T can do this but it is very much impaired compared to other children.

Observational learning is the foundation of being able to learn without direct instruction or training.  It is why many kids on the spectrum cannot learn very fast - everything has to be specifically trained and generalized.  This is contrasted to operant or classical conditioning or learning.  Observational learning is quicker and more natural.

If you think about how a typical classroom works - a teacher demonstrates something, or children work in groups and watch each other to learn.  They don't need to necessarily do something themselves to make an inference.

Observational learning can be as simple as watching another child go down a slide and noticing how to do it and when they might go.  A simply has never before demonstrated this ability, ever.  Everything has been taught explicitly, nothing has been learned spontaneously.

Such a simple thing, but a huge milestone for her.  Perhaps it will never be repeated...  but she has shown she is capable.  She has shown the ability is in there when motivated.

And that's pretty darn awesome.

Splitting the Spectrum

Recent changes in how autism is diagnosed have supposedly removed ambiguity about what autism is and what it isn't.  However, this to the benefit of clinicians (people diagnosing and treating autism), and not so much for the benefit of people impacted by autism and for the general public.

The previously separate autism spectrum disorders - autism, PDD-NOS, and Asperger Syndrome have been folded into "Autism Spectrum Disorder", or ASD.  Most people still use the term "autism" and "ASD" interchangeably, even though autism used to refer to classic autism, as defined by Leo Kanner.

So perhaps this made it easier for clinicians to diagnose autism... but it has made it harder for people living with it each day to get the supports they need.  The spectrum has become so wide it is meaningless, from the very capable to the very disabled.

People like Suzanne Wright of Autism Speaks who work to advocate for those with autism (and admittedly at the severe more disabled end of the spectrum) are slammed by many people who have autism (as it is defined now). 

The gulf has become too wide.  Parents with high functioning children towards the old Asperger Syndrome definition may be fretting about Johnny's difficulty making friends, whereas parents of low functioning children may be fretting about when their kid is going to get too big for them to handle when they become aggressive.  These two ends of the spectrum are so different - they present with such different problems that they are incompatible. 

Some people may argue that the low functioning end of the spectrum includes those with intellectual disability, and that is true.  But the high functioning end includes those with anxiety disorders and other problems too.

We can't keep classifying the low and high ends of the spectrum using cognitive ability as our measuring stick.  Intelligence in autism is very difficult to measure due to scatter in ability.  Instead of trying to roll up autism into one package with co-morbid conditions, why not recognize the reality that those who have huge difficulties with day to day living just don't have the same "autism" as those who do not?

I would like to see two autism definitions, perhaps "autism" and "Asperger Syndrome".  The key difference between these two diagnoses should be level of functioning across all areas outside of just social skills and social communication, IQ being irrelevant (I'd argue a person who has a high IQ but still cannot wipe their butt at age 18 is still as disabled as someone with a low IQ).

The high functioning "autism is a difference" crowd can go on with their mantra but under a different name.  Autism Speaks can "speak" for the low functioning crowd who have very severe difficulties living day to day.  There's just not enough in common to keep the spectrum together.  It's time to split it up and recognize the reality of what autism is.

It's Been a Long, Long While...

It's been a long, long while since I've posted on here.  Why?  Well, if you haven't been around, you might see something different.  Or check out the logo above.

What happened?

We moved.  Far.  Thousands of kilometres, in fact. 

You might think me crazy to uproot the entire family and move to the other side of the country... but hear me out, then you might change your mind.

I posted quite some time ago about the end of early intervention for A.

In that post, I asked... what to do?  Well, we figured it out.  We left.  We followed the services... and there are many to be had in Alberta.

Let's start with A.  Once IBI ends in Ontario, there is very little in the way of supports.  Yes, you can get the ABA program in Ontario now, but they are barred from entering the schools and there are waiting lists.  The quality of service is quite variable and the treatment protocol is indirect; it is a consultative service mostly geared to help parents cope.  Supports in the schools are even worse.  Every school board has its own policies in terms of what placements are available (and even when offered they may be full).  Boards have "specialists" but you're lucky if your kid's teacher gets a consult once a year let alone direct service.  In short, it sucks.  Life after IBI is not so good if after it's done, your kid still needs a lot of help.

Let's begin with schooling.  Ontario schools do a very poor job of educating kids with ASD.  Yes, there are some schools and some teachers and some principals who really do try, but they have no training (a weekend workshop on autism does not an expert make), and staffing levels can change at a moment's notice.  The biggest issue in Ontario is that special education grants go to the school board and there is no accountability in how that money is spent.

There are private school options in Ontario if you live in Toronto or Ottawa.  Tuition cost?  $56,000 per year.  Not affordable by a long shot.  What about in Calgary?  Yes, there is, and good news, it's $12,000 per year.  How is this possible?  One very important reason.  Alberta funds private schools and not only that, special education grants are tied to the student and go directly to the school in which they attend.  How about that?  What a logical idea.  The money that the government allocates for my kid is ... spent on my kid.  Neat.

Moving onto T on the school front.  In Ontario T would have half-time junior kindergarten (with us not living in a designated area for full day yet) in a classroom with 25 kids with zero support.  Here, T gets to attend a specialized pre-school with 10 kids, a teacher's aide, and a speech pathologist or occupational therapist in the room all the time.  No, not a once a year consult, but like direct therapy because these therapists are on staff at the school.  Not the board.  The school.  And we pay nothing for this, because guess what?  The school gets a grant for T and yet again, it's used to educate him.  Huh.

What about other supports?  There's lots:

• Respite supports so Mom and I can go out on dates or have time to ourselves.
• Overnight help for A when her sleeping is sucking.
• Community support to allow A and T to enjoy things typical kids do like swimming lessons or classes.
• Direct speech language, occupational and physiotherapy to help the kids development.
• Board Certified Behaviour Analyst to work with before mentioned team to work on behavioural issues and general learning.
• Support to hire one-on-one aides to work with the kids on skills.

There's no waiting list.  There's no bloated government bureaucracy that controls the funds or provides services at stupidly high rates when the private sector could do it more efficiently.  It's all about parent choice.

Still wondering why we moved?  We're not.  Well, maybe when it's -30 degrees outside.  But otherwise, not so much! 
 

An Unexpected Fatherhood

“Hope is the power of being cheerful in circumstances that we know to be desperate.”  - G.K. Chesterton

Something big is coming.  I can't talk about "it" just yet, because we need to get past a certain date before it can be truly public knowledge.

This something "big" - I have been wondering if it is the right decision for us lately.  I suppose I'm having cold feet.  I am pretty sure it is right, but like so many big decisions, doubts linger.  Then again, if I waited until I was 100% sure on all decision in my life, I would have never married or had kids in the first place.

I had a chance recently to share my story with a group of men at our local church.  Two points seemed to resonate the most with the guys - first, the fact that my ideal of fatherhood had to be (and still must be) radically redefined to meet the reality of my kids and their needs.  Second, the reality that A will be dependent on us forever, and T as well to some extent (it is too early to say and it could go either way with him).  T could do very well, adjust, and be relatively independent, or he could succumb to anxiety and aggression, conditions of which he is at great risk of developing.

To the first point, I need to grieve the fatherhood I wanted and move on.  It's an on-going process, probably life-long, but it's time to stop thinking about the fatherhood I wanted, and deal with the fatherhood I've been assigned, given, chosen for me. I need to find joy in that fatherhood and stop wishing for a different one.

To the second point, I feel like I need to explain (maybe just for myself) why we agonize over decisions.

If you don't have children, this analogy will probably be lost on you.  If you do, then you probably experience how quickly parenthood passes you by, one day, your child speaks a first world, the next day, they go to school, and the next, they are with their friends and you are the uncool parent.  In our parenting world, childhood is the same, but in slow motion.  Toys get used till they break either because they remain interesting for longer than most kids use them, or because their use is so ingrained change is too difficult for my kids to move on.  T re-discovers classics like Baby Einstein at age 4 (please save me from the Cat).  Milestones come, but oh, so painfully slowly.  I feel like my life is a 2 minute video on YouTube someone keeps playing over and over (maybe it's because my kids do this on a daily basis?)

Years from now, when your kids have moved on, when they are leaving for university or college, when they move out, get girlfriends and boyfriends, begin their careers, get married... years from now my kids will be at home with me, still moving slowly towards their own milestones.  A parenthood that so quickly passed for you, that morphed into something new so many times along the way, has stayed the same for me.  When you plan your daughter's wedding with her, I may be trying to come up with meaningful activities for her to do as school has ended with staff who have a high school education and a criminal background check.  When you retire and begin travelling, I will be trying to find suitable supported living conditions for my kids, praying they never suffer abuse or ill treatment.

When you die surrounded by your children and grandchildren in your old adage (hopefully with them involved in your end of life care), I will be praying my children will be well cared for and have a meaningful life when I am dead. 

My job as parent will never be over.  

I wanted my own dream of fatherhood.

I got an unexpected one.