Sick, sick, sick...

It's been a long two weeks.  Both Mom and Alanna got gastroenteritis, then we've had something like the flu the last week.  Sickness and autism do not mix well.  When my son was sick, he enjoyed cuddles and I felt I could "do" something to help him feel better, even though I really couldn't.  But Alanna, with her limited expressive communication, couldn't express her discomfort in any meaningful way.  We have not taught her to say "I don't feel well" using PECS, sign, or any vocalization yet, so the alternative is the old standby - crying, howling, and being generally miserable.  I tried to comfort her, and although she is generally quite affectionate (a fact for which I am most grateful), she would have none of it while she was sick.  I suppose I cannot fault her much for it seeing as when I was sick I would be happy to just be left alone (that could also be just wanting a break from the kids though too!)

While I am a biomedical skeptic, I can definitely understand the premise that kids with autism who feel physically ill are going to have behaviours and not gain skills to their potential.

Compassion

One of the things that has really struck me since Alanna's diagnosis with autism is how it has personally impacted my world view.  A person in a wheelchair, a person with an obvious intellectual disability or other condition would have probably gone unnoticed by me in days past.  I might have been polite, even moderately helpful, but probably noticeably uncomfortable and any help or social contact given would have been primarily motivated by wanting to disengage as quickly as possible.  Let's face it - people are in general not comfortable around those with disabilities.  They do not know what to say to such an individual, or they may be simply afraid of them.  Children intuitively sense this from their parents and learn this response unintentionally.


When I was in university I had the opportunity to do a bit of street mission.  What struck me most in that short time was that most of all, the homeless people on the streets wanted to be acknowledged as human.  They wanted to be able to share their stories and not be treated as if they didn't exist.  I have to admit, after that experience, I tried, when I could, to not treat a beggar like a slot machine for my guilt, but rather, to try to treat them like a person and understand their stories too.


This is the same reality for those with disabilities.  It is easier to pretend they do not exist, like the homeless (or criminals, or other undesirables) than it is to engage them as just another person.  


A wise person once told me that he knew within a few moments of meeting a person whether or not they would be generous with their time or money because of a true generous spirit rather than guilt.  He said, A man who believes he is where he is because of his own actions believes he deserves his fortune.  But a man who knows he has his fortune because he was chosen to have it will be more willing to give it up for the service of others.


So, I challenge you dear reader - the next time you see a person with a disability, engage them, get to know them.  If you don't know what to say or what to do, say so.  It may seem uncomfortable to you, but realize that the person you are addressing probably already knows this and has answered many such questions before.


How do I play with Alanna?  She is not responding to me.
Why doesn't Alanna talk?
You're in a wheelchair - do you want me to kneel when I speak to you?
You're struggling walking, should I be helping you?
I know it's hard for you to hear, does it help to speak more slowly?


Having a child with autism has made me a much more compassionate person.  I am starting to see others as God's children, people to be loved and celebrated, and that although people have and always will make poor choices, many people are where they are because of circumstances too.


Before you think I am going to sprout "autism is a gift" nonsense, let me be frank - it's not.  It sucks and I hate it.  If I could do anything to make Alanna's autism go away tomorrow I would do it in a heartbeat.  I simply wanted to point out that in our life circumstances, we can choose how to react - to learn and grow, or to be a victim.  I am thankful I can understand others better - even if, given a choice, I would have preferred to never have had such an understanding.  Perhaps that makes me a terrible person.  I just think it makes me human.  Like Alanna.  Like all of us - with or without disabilities.

How to Hire a Therapist

This was how I was feeling the other day when our longest serving therapist for Alanna announced she was resigning.  In truth, I am very happy for her - she is moving on to a solid full-time job at the school board.  She will be in classrooms and has years of experience working with kids on the autism spectrum.  Some lucky parents are going to be fortunate to have her around for their kids.

On the other hand, she has been with Alanna since she was 22 months old, and she knows Alanna inside and out... she calls them Alanna's "tells".  This is important because she can adapt her instruction based on how Alanna is reacting.  This takes a long time to develop well.  So I am admittedly very bummed about this situation.

Luckily we have already hired a replacement for this therapist.  Here is my advice for hiring therapists.  As always you are free to take it or leave it, or better yet, improve on it.

First - unless you are lucky enough to be in an area with private agencies (which in Canada is pretty much only the larger urban centres of at least 500,000 people), most therapists are independent.  In the South West catchment region for Ontario's Autism Intervention Program, there are no local agencies, though I am aware of a pre-school type program operating in Windsor.

Here is what I've found:
1.  The majority of therapists are women.  This is not very surprising in a profession working with younger children.  Also, men are likely to face huge obstacles (read: bias) against them because of the vulnerability of the population.  I am normally very positive about men working with children.  However, the thought of a male therapist alone with my little girl for hours a week, often working on things like toileting just doesn't sit with me.  It's completely unfair but that's just the daddy protector coming out in me.
2.  The majority of independent therapists are young.  Young being - early to mid twenties.  Most therapists who do well at the profession either get promoted to senior therapist positions (writing programming and supervising other therapists), or they leave in favour of something full-time with benefits in preparation for their up-coming maternity leave.
3.  Even with good pay and other perks, turn-over will be too high.  It takes a long time to train a therapist well, but there are two problems with ABA therapy jobs.  First, to make a living the therapist has to cobble together hours with multiple families.  The pay is therefore highly dependent on how busy they become.  They also have to deal with problems directly with the families and have no one to go to bat for them if there's a working issue.  Second, although most therapists enjoy working with children, it is a little isolating. If the child is presenting behaviours (i.e. you are being kicked, punched, bitten) and/or the child is not verbal (i.e., social behaviour is limited), it is a lot of work, and oftentimes there is no gratification because changes can be slow.
4.  Like anyone else, people leave for good reasons.  They get a better paying job, they want to change to careers, they get pregnant, their spouse got transferred, etc.  It all happens to everyone.
5.  Experience is great but "fit" is more important.  It's great if you can find an experienced therapist, but it will do you no good if the therapist is not experienced with your child's age group, or the way they learn.  I'd much rather hire a therapist who loves young children and is enthusiastic than someone who has worked exclusively with teenagers but has years of experience doing it.  Remember, this person is going to be spending hours together (probably 1:1) with your child every week.  They need to like each other!

I have resigned myself to #3 but wish I could do better.  It would be nice if everyone stayed at least a year but I'm not holding my breath.  Good times.

Parental Assessment

The Childhood Autism Rating Scale (CARS) is a common clinical assessment used to determine if a child falls on the autism spectrum.  When we had Alanna initially diagnosed at 22 months, this instrument was used (along with many others) to show she had autistic disorder.


Looking back at the clinician's rating (and ours - both were on the psychological assessment), we rated Alanna 47.  The highest possible score is 60, and severe autism is anything 37 or higher.


We recently did the CARS together and Alanna's score dropped from 47 (our original score) to 37.  This means Alanna (according to us - we are not clinicians) is close to dropping from "severe" to "mild/moderate" (she needs one more 1/2 point to drop to moderate).  We were being conservative so I am pretty confident a psychologist observing Alanna would probably rate in a similar way.  Here's the cool thing... the cut off score is 30.  If Alanna were to drop another 8 points in the next couple of years, she would technically be rated as "not having autism" on this scale.


Now - it's just one scale.  Other scales could still rate Alanna has having autism even if the CARS does not.  The CARS also doesn't speak at all to her intellectual or adaptive functioning.  She could still have serious delays even falling off the spectrum.  Still, it is very positive to see that she appears "less autistic" than she used to.  Now, don't get me wrong - you would notice right away something is "off" if you met her.  But take it from me - she is much less autistic than a year ago.  She has come so much out of her shell.  In particular (from the CARS) we see she:

• Is better at relating to people.
• Has become much better at imitating.
• Has improved play skills - she knows how to play with some toys.
• Can cope with changes in her environment.
• Is much less fearful and anxious.
• Has better non-verbal communication.

It is nice to see this laid out in an assessment - it confirms what we thought but makes us be a little more critical of our opinions.  Sometimes the parents can be too optimistic.

One Little Word

Words can be famous.  They can build up or destroy, be memorable or forgettable. They can make or break you, heal or harm you.  They can form a basis for deception, or strung together, tell a lasting truth.

When you can't find the words to say, sometimes you borrow someone else's... a quote added to the beginning of a composition, chapter of a book, or paper in university.  People with autism can use echolalia to convey a thought when they can't come up with the words on their own.

I marvel at the power of a word.

Today Alanna looked at me and smiled, then said Daddy.  She said it clear as a bell - she was clearly engaged and she knew what it meant.  I broke down right there beside her and sobbed.  I completely lost it.  The hope I had locked deep inside came out all at once and I just couldn't handle it.  My wife came beside me and wept with me and cradled my head until I could compose myself.

Before you revoke my man card, you have to understand what this means to me. I have been waiting for this word for three years, not knowing if it would ever come.  A child with autism is lost in their own world, and getting them out is a long, tortuous process.  Today Alanna was able to do more than just interact non-verbally... she showed recognition and called me by name.  It's as close as I've ever seen to her reaching out to me and expressing her feelings - something that comes to naturally to my son and other kids not affected by autism.

If you are a parent who has been through this - or perhaps you are still hoping for this moment, you know what I mean.  Something so small, yet so significant.  A memory I can hold onto during the bad times, the long nights, or the meltdowns.  I hope it will come again many times but there are no guarantees.

To all parents - treasure your children.  If they call you by name and recognize your face... if they show you their love, consider it a blessing.  It may be second nature to them, but to some parents these are words and expressions they will never hear.  They will love their children for years and never know one way or the other whether this is reciprocated.  They may dream, or guess, or think they know.  But to hear it for themselves is something else entirely.

She said Daddy!

Alanna Turns Three

I can't believe it - my little girl is three years old in a matter of hours.  All this time I've been holding out - saying she is two until she is three.  Well, now she is three.  To celebrate this milestone we've created a little video on her behalf.  Happy Birthday Alanna!  You are so special to us and so many other people.  Keep amazing us - we know you will!

What is Autism Recovery?

I have often wondered what the term recovery from autism really means.  Most autism treatments do not make this claim.  Some ABA providers make this claim, as do some biomedical proponents.

I am not going to comment on biomedical treatments because I have little experience with them nor much belief that they work beyond a gluten-free/casein free diet (In my personal experience only makes autism "better" by making children who have GI issues feel better.  This is not the same as "recovering" from the core deficits of autism.)

This recent article by Adrienne Perry, one of my favourite local autism researchers, finally breaks it down for me.  According to her study, she defines "best outcome" as:

• Testing in the non-autistic range on the CARS.
• Testing 85 or higher in IQ - that would be "low average", or in the 16th (or higher) percentile.
• Testing 85 or higher in Adaptive Behaviour Composite on the Vineland-II Adaptive Behaviour Scales.  This would mean the child is functioning at the 16th percentile or higher overall in their age group.  Note this includes social ability.

Of course, just because a child has accomplished "best outcome" doesn't mean they do not have residual affects of autism.  By definition, autism is diagnosed based on observed behaviour since there is no known medical test.  If a child tests non-autistic on the CARS, they are by definition not autistic.  Similarly, if their IQ and adaptive skills (that is, their ability to function in every day life) is close to average then one would expect the child is, for the most part, "recovered".

I think this is something of a misnomer because any "recovered" child with autism has more or less learned how to overcome their disability.  But the disability is still there.  For example, the CARS will ask if a child is distracted by visual stimuli.  A child who has "fallen off the spectrum" may still be distracted but know how to control the distraction, or at least not do it when people are looking.  It may not mean they've lost interest altogether.

Recovery or not, I think I personally need to get my head around the fact that autism will affect Alanna her entire life, and accepting that fact is not the same as giving up on her.  It's a hard pill to swallow.  I haven't taken it yet... but I'm trying.