Thursday, December 26, 2013

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.

Thursday, December 12, 2013

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! 

Thursday, June 13, 2013

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.


Wednesday, May 8, 2013

More Than Talking

As my kids age and their disability becomes more noticeable, I am always interested to see how they are perceived.  One thing I have noticed that other parents notice is that children's developmental levels are often determined by how much they say.  The more sophisticated the language, the more they expect.  The less sophisticated, the less they expect.  And for typically developing children this is not such a bad measure, assuming ability to express one's self is as equally developed as everything else.

But not so for autism.

For this reason, my son T's ability is usually over-estimated.  People forget he has autism, even though his language is over a year delayed.  He is almost four and still in diapers.  He is very clever at putting together scripts and other things he has heard in context, enough to fool the listener into thinking he is saying very witty things... except of course, since I have heard them all before, I know better.  Now, I am not dissing my son, I love him and he is very bright.  I love how he is coping and love how he uses echolalia so functionally.  But it does fool people into thinking he has fewer challenges then he really does....

And then we have the opposite problem with A.  She can express her wants and needs with speech output, but verbally is very limited.  For this reason, people are unsure or assume she cannot understand much or is quite severely disabled.  Now, I will not pretend she is less disabled than T, because overall she is, but many people try to do things for her she is quite capable of doing herself.  All of her language is very delayed, but she understands most of what is said, can follow two step directions and has some strong daily living skills, relative to others on the spectrum.

So - please, please, please, do not judge based on ability to talk.  Talking is one area of ability, and a child may be perfectly verbal but struggle with self-help skills, emotional regulation, cognitive functioning, or behaviour issues.  Or a child may be completely non-verbal but has age appropriate receptive language and self-help or daily living skills and academics.  You cannot know one way or the other based on talking alone.  My best advice?  Presume competence and back off as needed.

Sunday, March 3, 2013

Not your Typical Parenthood

Okay, I'm going to give you fair warning.  I am going to whine in this post.  I'm gonna share how I feel, and it not be right, and perhaps I'm a crappy dad for saying it, but it's on my mind, so I'm going to write about it.

I find it really difficult to relate to parents of typical children.

I feel like we're in this strange parallel universe where all parents, even those with special needs children, have at least one child who is typical.  This typical child produces, in some manner, some resemblance of a typical parent-child relationship.  I do not know a single family with multiple children, other than those I have passed in cyberspace, that have all special needs children.  Usually it is one child affected, but other children are "normal".

I was assisting in Sunday School today when I realized I had no idea if the behaviour I was witnessing was normal or not.  I don't know what normal is, I only know what my kids do... and that is not what most kids do.

I have written before about parent isolation.  Most people have what you would consider peer groups, and most of those peer groups have a very predictable trajectory:

  • Single people
  • Childless couples, usually younger
  • Couples with young children
  • Couples with school age children
  • Couples with teenagers
  • Couples with an empty nest / university aged children
  • Couples with a full empty nest and retired
I don't feel I have a peer group.  It is difficult to relate to a childless couple... we don't have the flexibility or free time they might have, nor do we look forward wistfully to starting our family.

I suppose we are closest to families with young children since although our children are pre-school age, they are both delayed developmentally (A much more so than T).  Even still, it is weird watching toddlers go to the bathroom when your 3.5 year old wants his diapers.

So I say again - I don't know what typical parenting is.  I only know what parenting my children is.  And it is very different than typical.

I'll admit, I very much struggle with this.  I went away on a trip last week for work, and when I came back the next morning, I prompted both kids to say hello to me (both were busy with our iPhones watching videos), just like any other morning.  They did not appear to notice I went anywhere.  There was no running to me yelling "Daddy, daddy", or "what did you get me", or "how was your trip".  There ... was... nothing.  Nothing.  Like I never left.

Let me go out on a limb here and say most of us feel loved the most when we are known and accepted by others, and we know and accept other people.  When I say "know", I mean at some deeper emotional level.  "Life", such as it is, has been shared and some intimacy has been gained between people.  I don't feel that way about my kids.  It hasn't happened yet.  It may never happen.  I feel like emotionally I still have infants.

That makes me sad.  It's not what I expected out of fatherhood.

Yes, I know it's not about me.  But I can still mourn the fact that for me, fatherhood will be very different.  If typical moments or rites of passage of fatherhood come for me, it will be later, or perhaps never. 

Forgive me if I'm sad about that.  It is what it is.  But today what it is really sucks. 

Tuesday, February 5, 2013

How to select a Speech Language Pathologist

For most children with autism, a Speech and Language Pathologist (SLP) is a must.  In many cases, an SLP is who a child will see first when they present with language delays or problems with social communication.  But like all professions, there are good SLPs and bad ones, and SLPs better suited to work with different populations than others.

Since A was diagnosed, we have seen (between both children) at least eight SLPs.  Of those eight, two were truly helpful, and two tried really hard.  The other three, not so much.  One we considered was so hostile to behaviour therapy she told us flat out she would not work with any family that used it.

So, beyond the obvious statement, make sure your SLP is validly registered in your jurisdiction (in Ontario, the College of Audiologists and Speech Language Pathologists, or in the rest of Canada, the Canadian Association of Audiologists and Speech and Language Pathologists).

Here are the other important considerations:

1.  Are they willing to work within an interdisciplinary team?

Most families treat autism with a variety of professionals, especially behaviour analysts and occupational therapists, but also potentially naturopathic doctors, music therapists, or others.  One SLP we worked with was convinced Floor Time was the bomb, and she would consider nothing else.  If any SLP is preaching one way as the only way, run away.  A good SLP will work with anyone you want, even if they are skeptical of the treatment approach.

2.  Do they understand your child's needs and cognitive ability?

First, a lot of children with classic autism have some degree of cognitive impairment.  This is not true of children with PDD-NOS or Asperger Syndrome.  Understanding a child's developmental level is crucial to understanding how to bring them along by using developmentally appropriate (not age appropriate) activities.

Second, many SLPs have a very top-down orientation.  That is to say, they want to teach understanding, and then use that understanding to shape a child's behaviour, or what they will do having that understanding.  As humans age, this is the proper way to teach - we have some understanding (even as very young children), so we act accordingly.

However, some children with autism, particular very young ones, or more severe ones, do not possess enough cognitive ability to understand.  So we have to switch to a bottom-up approach, and this is where we use the principles of behaviourism or ABA.  When you use this approach, a child doesn't need to understand why they are doing something, only to act in a certain way given a recognizable circumstance.  The "why" is never taught, which is a key problem in generalization - to truly generalize something, you need to know why you are doing it, because you can never truly memorize all of the circumstances.  You can approximate, but you'll never quite get all the way there.

Many SLPs have a tough time switching from top-down to bottom-up unless they work with a lot of children with severe autism.  

In terms of needs, any good SLP will begin with an assessment to get a sense of where they are starting, and then develop goals to know where they are going.  The goals should be SMART - specific, measurable, attainable, relevant and time-bound.  Most SLPs can do the specific, measurable and relevant part, but they miss attainable and time-bound.  A good SLP will modify goals after time to ensure therapy money is not being wasted.

Last year, we spent thousands of dollars (intensive 2 hours a week therapy) working with our current SLP to use a technique called PROMPT to get A to speak.  While this did increase A's sounds tremendously, she still could not form words consistently, and words she acquired she later lost or could not use consistently later.  When I asked this SLP about goals, she agreed that for the present time continuing to work on some single words was appropriate, but A's daily communication could best be met through Augmentative Communication.

3.  Do they have any experience working with verbal children with autism?

If your child is verbal, you need to know the answer to this question.  Typically developing children with language delays are very socially motivated.  SLPs with no experience with autism find it very challenging to engage children with autism when they have no practice doing so.  If they cannot describe how they work with such children, walk away.

The Hanen program "More Than Words" is particularly useful for verbal children with autism and most SLPs in Canada have this training.  If they do, it is a good sign.

4.  Do they have any experience working with non-verbal children with autism and AAC?

When A was 16 months we took her to see a very young SLP.  This woman was completely lost because at the time, A was totally unreachable.  Social interactions were rare, crying was the norm for requests.  Clearly, she was out of her element.  We did not stay with her very long.

When A was older, we worked with another SLP, and this one was very experienced.  However, she was completely untrained in the Picture Exchange Communication System (PECS), which has a very specific protocol for teaching using behaviour techniques.  At the time A was at phase IV - requesting with two pictures.  This SLP was signing to A using total communication as well as prompting her to use 4-5 pictures on a sentence strip.  A was simply overwhelmed at all of these new techniques.  Sign was too abstract, and there were too many pictures and they represented some abstract concepts (especially adjectives) she had not yet learned.  Clearly, this SLP did not have experience in the AAC we were using.

Because most children with autism develop speech, it is very hard to find good SLPs who know what to do with AAC devices, sign language or PECS.  For most children, AAC is a stop along the way to speech, but for some, like A, it is where they will stay.  

5.  Is this a person with whom you feel comfortable?

In the end, you will be spending a lot of time and money with your SLP.  Even if it's not your money, it is time you will not get again, so make sure you don't waste it.  The rapport the SLP has with you and your child is crucial to success.

Thursday, January 24, 2013

Ending Early Intervention

As A approaches her sixth birthday (late this year), we are beginning to contemplate her next steps.  Most programming in many jurisdictions end around age six, and although Ontario's IBI program does not have to end at age six, there is a lot of pressure from regional providers to put children into school once they are school age.

When A was younger, I never used to want to say "she will not recover" because I did not want to limit her potential.  As we approach school entry, however, I can now write that and not cringe.  She has made so many gains in the past three years, but looking at her developmental trajectory, she will always be behind her peers, particularly in regards to communication, social skills, and academics.  I do not think she will be independent and I think I am okay saying that.  I still believe she would adapt well to assisted living, perhaps not requiring a group home, but living with some supports.

So now, like so many parents before me, lies the crucial question.  What next?  What now?

If past experience is any indicator, A can learn, but not observationally.  She needs everything explicitly taught in a very systematic, step-by-step manner.  Series of steps need to be chained together and a task analysis performed for anything beyond one step.  Teaching her this way is doable, but it requires the teacher to have special training in ABA techniques.

A's community school has 500 students, 300 between ages 4 and 7.  There are at least six children with ASD at the school.  There is a high ESL population.  There are other exceptionalities at the school.  There are four education assistants (EAs).

I suppose an IPRC for A and T would increase this amount of EAs... it may, or it may not.  There are no guarantees of them having any knowledge of autism or ABA.  There are no guarantees those principles will be used.  Since A has very limited speech, there is no way I will really know what is going on at school.  Although I would be less worried about T, he is just now beginning to tell us some of what he does in pre-school.

What to do?

Do I abandon A to the school system and begin saving money for her dependent future?  Or do I continue to invest in teaching her skills, in the hopes she will have more options in her adulthood?  She will not be completely independent, but the more skills she has, the more options she will have... and we can rest easy knowing we did our best to prepare her for the rest of her life.

Some children with autism learn so slowly, this may be an easier decision.  Parents may know that learning will be slow, understand school is "something to do", and can save for the inevitable supports their child will need as an adult.  Some do so well with IBI they can actually benefit from general education.

Then there is A, and many like her, in between.  They do not learn fast enough to function in general education, but not so slowly a parent can feel stopping all real learning makes any sense. 

Many parents have counselled me to be open to "inclusion" - even if A is at a JK level academically, that being in a grade one class makes sense.  She will be invited to birthday parties.  Kids will say hello to her.  She'll have "friends" in school.

These are all nice things.

Will it make any difference at age 21 when she is finished school, and all of her friends in grade one are off to university?  I wish A could tell me.  If she said, "I want to go to school with everyone else", this decision would be so much easier.  But she can't tell me, and I know she will get frustrated in general education, yet not pushed or challenged enough in special education.

What to do?

Socializing kids with autism is important, but I am not sure school is the place to do it.  Developmentally, as our kids age, they are further behind their peers every year, especially socially.  Some kids with autism are not as delayed, and so can benefit from the peer interaction.  But when the gulf becomes wide - an eight year old functioning like a three year old, the "peer" interaction no longer makes sense.  The social interactions of eight year olds are well beyond a three year old, unless adapted by the eight year old.  

I think children with autism can be socialized outside school in community activities, such as camps, community service clubs, and leisure activities, as well as programs intended for people with special needs.  

I think school is for learning.

What to do?

You'll have to wait to find out.  But there is a plan.