Autism, compulsions and avant-garde haircuts

Sophie lounging post-haircut

I have noticed my past several posts were rather um, verbose, so this won't be so long. That's the plan anyway.

One of Sophie's more disturbing behaviours is pulling out her hair. She yanks out a strand, then runs it along her tongue. It has gotten a bit better since we started using the chewing necklaces, but she has managed to create a pretty hefty bald spot on the left side of her hair (the light side, I suspect that hair is weaker and easier to pull out). I have to admit we had a hard time with this. I guess this went beyond quirky and into self-harming in our minds. One of the scariest autism traits.

Sophie's self-induced bald spot


So we have decided to give her a fashionable, shaved-on-one-side haircut. It's a blessing of sorts that these kind of haircuts are in fashion now and she might look deliberately punky, as opposed to very weird :)

Watching Thomas, not bothered by haircut


She tolerated the haircut well, she can tolerate a lot with Thomas on the IPad and a bowl of blueberries in front of her. Her daddy buzzed her with an electric razor on the side and trimmed up the rest for a shapely bob.

It turned out well. Hopefully now her hair can grow back stronger. She seems to have dropped that habit anyway in favour of chewing everything in sight and digging in her diaper. She is a bundle of compulsions, moves from one to the other. I do wonder what's next sometimes... But for tonight I am happy Sophie has a funky, cute haircut instead of an awkward fuzzy bald spot. I will worry about compulsive behaviours some other time.

She knows she's fab



Intro to Facebook- lets talk autism services

Right off the bat, I want to announce that On the Train with Sophie now has its very own Facebook page! Which might seem pretty rudimentary to most, but I won't even bore anyone how long it took me to set it up and the headache I had when I was done... So just for that effort, maybe you can go and "like it" right now? That would be so nice :) I feel almost in the 21st century now.

One of the first things I posted on that crisp, new page was this article from our city paper. It announced that Ontario's auditor general is making a formal inquiry into the province's autism services. This might be a direct response to a big exposé that the same paper did about the sadly lacking services in our province, entitled The Autism Project. The multi-part investigative series exposed deficits all across the board, from early intervention to school to adults living with autism.

Of course I was very interested to read both the series and this new announcement. Ontario is viewed by most as Canada's wealthiest province, yet when it comes to autism services it is lagging behind other provinces.

I thought I'd take this opportunity to make our readers aware of what exactly a newly diagnosed autistic child in Ontario receives as funded services. I won't list private services because I'm sure they're similar everywhere- if you can pay $60 000 and up a year, I'm sure you can access any therapy you want.

When Sophie received her diagnosis in August, we had to complete stacks of forms and have various intake interviews done. When that was completed Sophie ended up on a wait list for ABA (at an autism centre), IBI (if proven eligible), one hour of occupational therapy every two weeks (started in November) and speech therapy (starting tomorrow, yay). The ABA wait list is at the very least a year, most likely more. For the IBI ( individual behaviour intervention, a one-on-one ABA program) she was seen by an assessment team and found to be "young" (early intervention??) and her application was placed on hold. Perhaps they are hoping she will outgrow her autism, excuse my sarcasm. We have personally put her on the wait list for an integrated preschool with all kinds of therapists on staff. Also a year, at least. We have also filled out forms for disability assistance and other funding and so far haven't heard back regarding our eligibility.

Sophie at play group

And that is that. So in summary, since Sophie received her diagnosis (six months ago) the only consistent therapy she receives is occupational therapy for an hour, every two weeks. And the rest of the time? I take her to free community drop in program every morning. We are teaching her PECS. Her daddy takes her to a city-run toddler gym on Saturday mornings. We take her everywhere we can with us to get her away from the tv and to provide a rich learning environment. We do the best we can.

So what would I like to see addressed if I knew somebody that had the power to make some changes was listening? First of all, find a way to streamline all the paperwork! Parents who are just coming to terms with the fact that their child has a lifelong disability should not have to spend hours filling out forms to access funding and services. At the very least there should be an online form that you need to fill out once and that gets distributed to all agencies.

Second of all, treat each child as an individual case. Don't use a one-size-fits-most approach. What does the child need most? Speech? Occupational therapy? Behavioural therapy? We know that autism is a spectrum disorder. Shouldn't the interventions used fall on a spectrum as well?

Third of all, give the parents a choice! Yes, ABA is a tried and true approach that works well for some kids. But it is not the only one. Why not offer trained providers in several of the leading forms of therapy, such as DIR Floortime, Son Rise or Pivotal Response, to name the main ones. And then don't make the parents lock in to an approach either. If after several months of effort it doesn't seem to be working, let them try something else.

And finally, autism is a whole body disorder. Studies are finally coming out to prove that point. Offer the help of nutritionists, genetics, or allergists without being begged to. Be willing to listen to parents who have questions about dietery changes or supplements. Don't force us to have to stay up all night poring over biology texts and fumble around researching our own treatment plan. Don't make us pay out of pocket for doctors who are willing to listen- at a high price.

And now, I pose this question to you, my readers. I know the majority of our readers are from the States and Canada, but there are a significant number from Europe (hello, Finland :) and Middle East as well. How are services where you live? What is great, what is missing? Come on you lurkers, let's get some conversation going!



More autism findings (if you're into this kind of thing)

I mentioned before that I oscillate between autism burnout and reading everything autism-related trying to piece the puzzle together. I was in the autism burnout stage for the past two months or so, but a new study pulled me out and into the research stage again. Of course while researching online it is very easy to get sidetracked onto different tangents, so my research binge actually brought three different and interesting studies to my attention. Perhaps others might find some interest in them too.

Study 1 "gut bacteria"

Why is relevant to me: Sophie always had a delicate digestive system. Her regression was spearheaded by a massive gastointestinal illness which consisted of diarrhea and vomiting for 2 weeks. We had put her on the gluten and casein free diet and noticed almost immediate improvement. She has been on it for almost a year, and we have since eliminated corn and soy too, along with dyes, artificial flavourings, etc. I was always interested in the gluten theory of "leaky gut" and malabsorption of nutrients, but was wary of jumping to conclusions (being the skeptic that I am). Prior to the diet change Sophie lost a ton weight and just looked ill. She also sweated profusely and her sweat had a very unpleasant odour. That instantly disappeared when we removed gluten from her diet. I don't think that gluten intolerance caused her autism. I do think that a lot of autistic children display symptoms of metabolic disorders combined with other physical symptoms and Sophie seems to be one of them.

While the topic of digestive problems being associated with autism isn't new per se, this study actually did find a link between a malabsorbed fatty acid and neurological damage. It also uncovered a compound called carnitine which was lacking in a lot of the subjects tested. Considering Sophie's regression and physical improvement on the diet I do think its a relevant finding. Of course they still haven't come up with a specific treatment plan to reverse the damage, but I think they're on the right track. I was always wondering if there was some special fatty acid metabolism deficiency that was causing her problems and damage to her brain (not because I'm a biology genius, but because I watched "Lorenzo's Oil" when I was a teenager).

Also, this project is part of a collaborative effort which is, as far as I know, the first large-scale study that involves researchers from several vastly different disciplines (behavioural neurobiology, genetics, epilepsy, neurotransmitter systems, toxicology, sex hormones, diet, metabolism, immunology and microbiology) combining their efforts and trying to look at the "big picture" of autism together. I will be following their efforts with much interest.

Study 2 "autism, hypo pigmentation and vitamin d"

Sophie's "dark side"

Why it's relevant to me: Sophie has a very unique form of albinism which no doctor was able to tell me much about. Basically she is lacking pigment on the left side of her head, causing half her hair to be very light blond, and also her left eyebrow and set of eyelashes (the rest of her hair is brown). Her skin is porcelain, and her eyes a pale blue, which is not typical in our family. All our other children have dark brown eyes and a slightly darker complexion. I did some research when she was born, more out of curiosity than anything else. Of course we thought she was beautiful, and so unique. I vaguely recalled reading somewhere that white streaks could signal rare genetic conditions but didn't find it applying to Sophie.

Note the difference in eyelash and eyebrow colour


This study makes some connections with lack of vitamin D and autism, which I have also read before. But in this context, combined with the hypo-pigmentation, it really struck a chord with me. The questions the study raised- would the albino child be autistic because of vitamin D deficiency in utero, or was he deprived of vitamin D (as sunshine) because of his larger vulnerability, as perceived by his parents (I know I did shield Sophie from the sun more than my other babies in her first year). They also raise some questions on genetic predisposition to albinism, Autism and the role vitamin D plays in both.

So I added vitamin D on top of the multivitamin she is already taking and bought an omega 3 supplement. She has been on probiotics for a long time. I am also looking into either a carnosine supplement , which apparently works well for lots of autistic kids, vs carnitine, the compound that was mentioned in the metabolic study but want to do more research first.

Study 3 "the shutdown"

Why it's relevant to me: This is really something. When Sophie is faced with a new situation, specifically when she feels there is some expectation of her (an assessment, a doctor's appointment), she literally falls asleep within 5 minutes. I wrote about this before, thinking it's a "Sophie thing". Doctors were baffled, the developmental paediatrician referred us to a neurologist, she had the sleep study... Apparently nobody ever heard of something like this.

Well, I stumbled onto this article while doing some mindless blog hopping and read this;

A shutdown is a particular sequence of behavior which we observed in a child diagnosed as high-functioning within the autistic spectrum. In academic settings when pressured by an adult to perform tasks that were difficult, she became unresponsive, sleepy, immobile, and limp to the touch for several minutes, and then fell asleep in a chair for as briefly as 10 min. and up to 2 hours. These shutdown (SD) states were always triggered by social stress of a certain kind and they became more severe and frequent over a period of about a year.

It describes Sophie perfectly. The article lists many different types of shutdowns (the above is termed "full shutdown"), including speech, language, visual, motor, etc. There are testimonials from autistic people describing how they feel during a shutdown and how they cope. The article also poses a theory that regression might just be a long term shutdown, same as loss of specific skills. It is definitely a very fascinating read, and a topic I will look into more.

And there you have it. The most relevant findings from my studies over the last week. There is so much discrepancy in the autism community, so many avenues of therapy which seem almost mutually exclusive. But I am not much of a joiner and don't enjoy exclusive clubs. We are still early on in our journey and don't want to prematurely close any doors. Recently a friend told me that she read that autism being a spectrum, there is also a spectrum of interventions that work and just because one works on one child it does not mean it would work on an other. For example, some kids might respond to 40 hours of ABA a week. I don't think that Sophie would at this time. Or maybe never. Some kids might present more with the "autism as a whole body disorder" series of symptoms. I think Sophie is one of them. She is just so unique among our children, and not just because of autism. But I guess the main reason I keep researching is that I don't want to give up. I don't want to have regrets down the road of "maybe we should have tried this or that." Wherever this journey takes us, I want to be able to look back and say "we did all that we could".




Ad astra per alas porci – to the stars on the wings of a pig

****** This is a guest post, written by Sophie's daddy. Enjoy!******

Sophie is special. She wasn't always this way. She's got autism now. A word that no parent wants to hear. But it happens.

Before we had kids, me and my wife moved in together and combined our mutual, rather large, libraries. I contributed a rather dry selection of academic texts, very little fiction. My wife on the other hand, brought into the relationship a wonderful selection of great modern fiction, some classics, a bible, selection of American poetry and 'On the road'. Years later, the book arrangement made it handy for me, when vacation time rolled around, to ask for a book to read on the beach. This time she gave me 'Travels with Charley: In Search of America'. 'Ah, Steinbeck,'I thought, 'got to read this one.'

The weather was great, the kids [three of them at that time, including Sophie, who was not autistic just yet] kept us busy and I ended up not reading the book except for the introduction, which also featured an image. The image was of Steinbeck's personal mark – a picture of a pig with wings, the 'Pigasus'. Underneath a caption, in Latin read, 'ad astra per alas porci' – 'to the stars on a wings of a pig'. It meant to represent the struggle that the author's life was in achieveing succes, and, a rather witty take on the very-able-at-reaching-stars 'Pegasus' I thought.

Since Sophie was slow to walk, I was spending all my days carrying her around places. Wherever we went, to all the places, taking her where ever she wanted, or taking her places that I thought she would like to see and experience – I was carrying her around. In comparison, by that age, her siblings were all upright – running and climbing and getting into places where they shouldn't. And my personal opinion of Sophie, at that time, was that she was being just a little lazy, not challenging herself enough.

I began to call her affectionately 'my little pigasus' - with her size, it felt to me as if I was carrying a little piglet around, and I only say that because I have personal experience of wrestling piglets as a child. I recall great joy seeing her stumbling around, trying to break into a brief trot, only to end up stumbling with me breaking her fall. 'Fly Pigasus,' I'd say, 'fly,' throwing her up in the air and getting an awesomely rewarding grin in return.

She struggled to walk. It was not easy for her. Her physical development was lagging. She missed all the important physical developmental milestones. But she was very charming and very smart – gifted we thought with my wife – and we felt like we won the 'child lottery' with her.

On the last day, I blew the family vacation budget, by purchasing a ceramic piece at a local giftshop – the sight of it caught me completely off guard and I immediately fell in love with it. That ceramic piece was everything that Sophie was, it was exactly how I saw her then – a piglet with wings, her head raised up high, looking at the stars. 'Pigasus' – the statue was forshadowing of things to come – the struggle of one individual to reach their dreams against many odds.

Then autism came. Sophie regressed. It is hard for me to write that she used to greet me with 'hi daddy', and that now she is non-verbal. It is a great mystery, to both me and my wife - something that both haunts us and give us great strength to fight for our Sophie - but the last word that Sophie lost, was 'help'. 'Help, help' she'd say. Help me and put on the Thomas the Tank Engine show on for me please. Or, 'Help, help', make sandwiches for me.

Autism is seen as a great struggle in our society.

But I have great hope for Sophie. I believe that she will reach her potential and be content in life. She will fly one day. And us, her parents, will be there to help her do just that.


'Fly Pigasus! Fly!


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