Tuesday, September 15, 2015

Why are Schools so Unprepared for Autism?

In Australian news this week, there was a story about a school principal who was fired for attempting to use a cage to restrain a child on the autism spectrum who was experiencing meltdowns.

You can read about that story here and here.

Why This is Wrong
There's a lot to be said about this situation but first things first; was the education minister right to fire that principal?

While I hate to see anyone out of a job, my answer here is an unequivocal "yes!"

There's a few reasons for this;

  • Human Rights
    First of all, any form of incarceration is a matter of human rights. You simply can't detain people, even if they're clearly in the wrong.  When I was doing scouts we were told about a park ranger who caught someone defacing park property and detained the person on site. He (the park ranger) was arrested.

    If the matter of human rights is made clear to volunteer groups who look after children, then I'm pretty sure that we can expect it to have been covered many times during the syllabus of any degree or other qualification held by teaching staff.

    A school principal is generally expected to be among the more highly educated members of a school's teaching staff, so certainly they at least should be well aware of the situation.

  • Money
    I don't have much to say on this matter other than the fact that the cage was built using $5,195 of school funds and for a single child. Apart from the fact that the principal didn't get approval to use those funds for that purpose, it also seems pretty clear to me that if you were going to spend that much on a single child, you could invest in a wiser choice of educational tool.

    In fact, with school expenditure so tight, a principal is expected to be very certain before committing to an amount of that nature.

  • Failure to use Existing Resources
    For me, the biggest failure was the failure to use resources which were apparently readily available.

    A report on the incident "notes that support services are available to schools, including behaviour specialists and counsellors, but the principal did not make a request for such assistance before the 'inappropriate' structure was installed".

We are not Experts 
No person is an expert on all of the different kinds of problems experienced by school children. In fact, no person is an expert on the autistic behaviour of all children. We can advise but it's long been said;

If you've met one person with autism, then you've met ONE person with autism.

People with autism are individuals FIRST and "autistic" second. Their many differences make it impossible to use a single theory or working practice to address all of their needs and quirks. The best that you can do is try a common therapy and if that fails, try a different one.

Sometimes when a person with autism exhibits a particular set of behaviours, such as a meltdown, they can present as "dangerous".  Sometimes they really are dangerous but most of the time, if given appropriate space, they can calm down. Over time, with care, most people with autism can learn to control these meltdowns -- or at least reduce their severity.

I'm sure that the principal of the school in question had a reason for thinking that the cage might work but such an idea is easily trialled with a single room.  If placing the subject of the meltdown into an empty (of other people) room did not quell the meltdown, then it's unlikely that a cage will succeed. More importantly though radical and dangerous new therapies should not be tried without appropriate expertise. If the school had support services available, they should have been consulted. It's likely that they could have prevented both the trauma and the expense.

If in doubt, call in the experts. When it comes to autism, money spent on appropriate personnel is far more valuable than money spent on equipment.

What is Needed in Schools
Although they made it clear that there was a special needs taskforce which was ignored by the principal, I believe that it's simply not enough.  There really needs to be local and roving resources with lots of experience with autism who can be called at a moment's notice to deal with problems which are too far outside of the experience of normal teaching staff.

Meltdowns are something that really needs to be handled by very experienced personnel.

In addition, the taskforce should be given the job of looking over and approving modifications for students with special needs. It should not be possible for teaching staff to design and implement their own solutions without an independent review.

Not only will this prevent "crazy solutions" such as cells, but it may help to "socialise" clever solutions to allow good ideas to benefit more than one school.

Let's hope that nothing like this happens again.... of course the reality is that it's only a matter of time. 

Sunday, August 23, 2015

Book Review: Building Bridges through Sensory Integration (Third Edition)

Building Bridges through Sensory Integration (Third Edition) is a book written by occupational therapists, for occupational therapists, parents and carers. It deals primarily with children with Autism spectrum disorders but includes a lot of material on Sensory Processing Disorder (SPD) as well.

The book is divided into several sections. The first introduces concepts and covers a lot of interesting theory, in particular, there's a great chapter on how the senses work in co-ordination with each other and how conditions, such as autism, can interrupt that processing.

Apart from the early chapters, this is not a book that you can read "cover to cover" as a lot of material feels very repetitive and too detailed when read this way. For example, there's comprehensive coverage of each of the senses with discussion on how each presents as under-active and over-active. There's also coverage of sensory seeking and sensory blocking behaviours in children. This is followed by information on how to reduce (or increase as necessary) sensory input.

This book is best used as a very handy reference for a variety of senses and situations. It's a book that anyone in OT should keep within easy reach.

The later parts of this book cover specific "everyday" situations of under and over stimulation, such as brushing teeth, combing hair, going to noisy or smelly places and dealing with self-stimulating behaviour.

The book also contains many useful diagrams and worksheets  which can be copied to use in specific situations. There are also rules for games, recipes such as edible play dough and lots of ideas for building/collecting the equipment for various play therapies and useful objects such as "fidget bags".

Overall, this is a great reference which is a "must" for occupational therapists. The amount of benefit that general parents will get from the book will depend largely upon the age of your child (the younger, the better) and the degree and variety of sensory issues that your child displays.

Of course, if your child has a diagnosis of SPD, you should just buy the book- you'll need it.

Building Bridges through Sensory Integration (Third Edition) 
Therapy for Children with Autism and Other Pervasive Developmental Disorders 
Ellen Yack BSc, MEd, OT & Paula Aquilla, BSc, OT & Shirley Sutton, BSc, OT
Published by Sensory World 2015.

Building Bridges through Sensory Integration is available as a large format paperback from Sensory World and as either paperback or Kindle e-Book from Amazon. It's easily the most comprehensive references on dealing with under and over stimulation of the senses.

Honesty clause; I was provided with a copy of Building Bridges for review purposes.

Thursday, August 6, 2015

Movie Review: Eagle vs Shark (2007)

Eagle vs Shark is a film which never actually mentions the words "Asperger's syndrome" but is clearly about two individuals with Asperger's meeting and and falling in love. In fact, it takes the whole genetics thing so far that at times, it feels like nearly everyone in the film has it. 

Eagle vs Shark (2007) is a Kiwi (New Zealand) film which is at times very awkward to watch, It's described as a comedy but feels like a comedy/drama/art film.

It's also billed as a film about two unattractive people falling in love with taglines like;
  • "Love is Blind.... Luckily" 
  • "Opposites. Unattractive."
  • "Finding love was never so... Awkward."
  • "There's someone for everyone...apparently"

In a way, I found these taglines somewhat offensive because they concentrate so much on the "unattractiveness" of the main stars instead of on the traits that make them different enough that they find it difficult to find love.

Aspects of Asperger's Syndrome
The two main characters, Jarrod and Lily display a lot of Asperger's traits and like other "awkward" films about characters with Asperger's syndrome (Napoleon Dynamite for example) these traits have been turned up to a "maximum".  The traits and stereotypes in the film are much stronger than you'd find in real life but they're nevertheless fairly common.

 This is particularly apparent in the way that the two characters speak in mostly stunted, closed sentences and rarely follow up on what the other person is saying. Sometimes it feels like they're having separate but similar conversations in the same room. There's also a monotone through their conversation which strips them of nearly all emotion.

Lily's character displays a few other traits, particularly a coping mechanism where she goes down to the local playground and runs in a tube.  There's a lot of general awkwardness and there's a clear lack of social understanding. She's also picked on by her colleagues in the workplace. Lily spends a lot of time in enclosed costumes, with both the shark costume and her sleeping bag being over-used, liking that "wrapped" feeling is a pretty common Asperger's trait.

Jarrod's character shows very low emotional intelligence, he concentrates on his own feelings and completely misses cues from those around him. Everything Jarrod does is self-focussed. His words and actions hurt others but he's mostly blind to the hurt he causes.

Much of Jarrod's story is focussed around him wanting to get revenge on a school bully.  As it turns out, the bully has forgotten everything about the bullying incidents but Jarrod can't let go. Again, this is a very common trait amongst people with Asperger's syndrome.  They can't let go of some things - and they affect them very deeply indeed.  Jarrod's actions are awkward and at times quite shocking but all the more believable because they are. I've met many people with Asperger's syndrome who are exactly like Jarrod. 

Even the background characters, like Lily's brother and Jarrod's friends have a number of Asperger's traits leading you to wonder if the whole town is affected or if it's just that people with Asperger's syndrome tend to attract others who are similar. 

Movie quotes are tossed around casually and there are some great moments where Lily's brother Damon tries to impersonate Arnold Schwartzenegger. 

It's a weird watch but it's worth it. 

Eagle vs Shark is available on Amazon and Google Play and presumably in stores. 

Friday, July 31, 2015

When Your Child Keeps Making a big deal out of Injuries

Some people with Asperger's syndrome are actually quite good at shutting out pain while others seem to feel every single cut, bruise or scrape in the most traumatic way.  It's also not unusual for a person with Asperger's syndrome to sit at both ends of the spectrum at more or less the same time.  Different types of pain register quite differently.

Being Under-Sensitive
One of the biggest problems, particularly with babies with Asperger's syndrome, is that when there is a very real problem, they don't always make enough noise to have it taken seriously by their parents. It's not uncommon for a child with Asperger's to be, for example, "a quiet child who rarely cries" but turn out to have ear problems due to repeated ear infections.

If you're lucky enough to have a quiet baby remember that if it does cry for a long period at some point, that small cry might be the equivalent of an all-day cry from a "frequent crier" baby.  All kids do not express their pain equally.

Overly-Sensitive Children
Some children seem to be overly sensitive and even the smallest of bumps will bring out the tears. At a young age, this is easy to dismiss but as the child grows older, it becomes a problem. Children who "cry at the drop of a hat" can often lose friends over the problem.

There are different ways around the problem;

Big Boys Don't Cry
Making a rule that "big boys" or indeed "big girls", don't cry is an old, time-tested method. It's the method my parents used on me and I can confirm that it certainly does work as a method of getting the crying to stop. Unfortunately this is quite a harsh discipline by today's standards and it doesn't stop sadness but simply drives those feelings beneath the surface. Teaching children to suppress their feelings can lead to other problems as they get older.

It will stop.... eventually.
This is essentially the modern parent's knee-jerk reaction to the "Big Boys don't Cry" rule. Let them cry all they want and hope that eventually your child will grow out of it.

This is actually a good policy for younger children and it's true that kids generally do eventually grow out of constant crying but it's quite possible that they'll set themselves up for bullying if they cry a lot in front of their peers at school. It's okay to let things go for a while but eventually they may need to be told to stop.

Stopping the Crying
If your child is approaching their teen years and is still a constant crier, then you really can't leave it any longer -- you need to get involved. 

First of all, you need to evaluate your child for issues. For example, consider and if necessary, consult with a doctor;

  • Does your child exhibit unusual sensitivity to light, to touch or to sounds or smells?  If so, it's possible  that your child has Sensory Processing Disorder (SPD). Usually this is picked up at an early age but sometimes it can remain hidden for years. SPD could mean that your child is experiencing constant discomfort as they navigate their world. Sometimes, just a few simple changes, such as noise reducing headphones or  glasses with Irlen Coloured Lenses can reduce that discomfort to a more manageable level.
  • Has your child experienced psychological trauma? Normally people mentally associate psychological trauma with child abuse but that's not necessarily the case. Children are very sensitive to the world around them and they take a lot of "background" information on board. For example, if you've been busy helping a close friend or relative with a debilitating and/or traumatic illness, such as cancer, you may be surprised by how much of that trauma your child is taking on board. Clear signs could include an unreasonable fear of doctors, hospitals or medications ... or simply clingyness.

If your child's reactions don't seem to stem from medical or psychological issues, then it's time to push forward with behavioural modifications intended to reduce the crying.  As discussed earlier, negative reinforcement does actually work but it can hide other problems.  Positive reinforcement is the recommended treatment;

Praise for Control
If you happen to see a moment when your child is clearly emotional but manages to control their sadness, be sure to praise it (just not "in the moment").  Wait until your child has put significant distance between the event and when you're by yourselves.  After all, even discussing a distressing event can bring memories of it flooding back and undo all their hard work. That's okay though, you're not trying to suppress tears when you're alone (everyone cries when they're alone), you're trying to prevent them in a public place where they could lead to exclusion and ridicule.

Tell your child; "I saw that you managed to not cry when xyz happened.  I'm so proud of you for holding yourself together. That's very grown up behaviour".  Then, let the matter drop. Don't harp on about it because if your child has managed to let it go, you should too.

Offer Support
If your child looks like they're struggling in a social situation, help them find the words to excuse themselves. Teach them that they can ask to go to the bathroom or call for "time-out" or ask for a bit of "space". Sometimes you'll have to say the words for them but eventually they'll be able to follow their own initiative.

Keep Moving Forwards
Your child is bound to slip up at some point. Remind them that everyone has bad days every now and then. That's okay. Don't dwell on failings, just help them pull themselves together and move past it. Better luck next time.

As your child becomes more centred and less emotional, they'll usually find that their new-found stability makes them easier to be friends with. A little stability can lead to a significant increase in overall happiness.

Thursday, July 23, 2015

Where to Now? Medication and Paediatricians and Teenagers with Asperger's Syndrome

We've been taking our kids to see the same developmental paediatrician for a decade now and sadly he's moving to a less accessible place. Happily, he's such as great doctor that we'll still go the extra mile (miles) for him but our last visit did prompt the discussion;

Where to now?

I thought I'd share some key points of discussion with you because I know that so many parents are in the same position (not so much of losing a doctor but of having kids that are growing up).  It's probable that many of my readers have not yet have asked these questions.

Ritalin into the Future
Our eldest has spent a decade on Ritalin/Concerta and we can attest to the fact that it doesn't present any serious side-effects (at least, not in him).  We've always kept him and his brother off Ritalin on weekends except where there are events requiring significant focus.

We stop the Ritalin during the holidays too, with the aim being to allow the boys to fully "be themselves" and hopefully learn to self-manage their unfortunate outbursts and impulses.  Sometimes this works and sometimes it doesn't.

Arguably, the main reason that we continue to see the developmental paediatrician every six months is that in Australia, Ritalin cannot be prescribed by a GP. It needs a doctor with the right training and focus. As it turns out, this is a happy event for us because it means that we at least have one doctor who is fully across the development of our children -- something that has become difficult in these days of "medical centres" and the lack of "family practice" doctors.

Rather than simply discuss "where are we going to get the Ritalin from now", I wanted to go back to our original thoughts. We'd always assumed that the kids wouldn't need to be on Ritalin for the rest of their lives and to be honest, I'd expected that they'd be off it long before now.

We were told that most kids find that they need to stay on Ritalin until they finish school but that nearly all come off it in the years immediately following school, either in work or university/college. Our doctor said that in his opinion there were two main reasons for this;

  1. The post-school age kids are just that little bit older and more mature -- and this makes it easier for them to keep their focus on tasks and control their impulsive behaviour.
  2. Kids in the workforce or in tertiary studies are there not so much because they have to be but because they want to be there.  Usually these studies are in areas which are more aligned to their interests and as such, it's not so difficult to remain on task. 

I think these are both good points, I'd always assumed the first but it's only now that I've listened to the doctor that I feel that the second point is more important.

I've always felt that the best thing you can do for a person with Asperger's syndrome is to ensure that they follow their special interests.

Developmental Paediatricians into the Future
The other important point that our developmental paediatrician raised was that once kids reach eighteen (our eldest is turning sixteen in a few months), they are really classified as adults and he can't continue to see them but must hand them off to a psychologist.

I'd never really thought about this before because personally I've dealt with most of the symptoms of my own Aspergers via the internet and forums.  I don't need a psychologist because for me, blogging, writing and discussing things with my peers (who are also on the autism spectrum) is therapy.

Obviously this  kind of therapy won't work for everyone, particularly not for younger or less confident people who aren't necessarily ready to confide in others -- and who may not even "know" what is really going through their own minds -- yet.

I thought about the transfer process from one doctor to  another and I've realised that a complete handover could be quite traumatic for the kids.  I'm sure that these transitions are done with care, perhaps over six or so months but I can't help feeling that we're actually lucky that our paediatrician is moving away.

We're going to start the transition phase early and instead of seeing our paediatrician once every six months, we'll see him annually (and see a psychologist with a background in autism in the alternate six month period).  This will allow us to stretch out the transition period just a little longer and it will hopefully keep the two doctors in communication.

Given the trauma of recent years (we've had a couple of very difficult and unexpected deaths in the family these last years), it might be for the best anyway, to start the boys seeing a professional who is able to deal with the trauma that life and autism throws up.

Wednesday, July 8, 2015

Book Review: My Autistic Awakening: Unlocking the potential for a life well lived by Rachael Lee Harris

There are a lot of "Autism Biographies" around these days and they mostly follow the same patterns; Childhood difficulties, school bullying, addiction to "alone-time", workplace bullying and finally the discovery of autism and acceptance of one's place in the world.

This story is quite different. 

This is a story about someone who didn't struggle quite so hard  Autism plays a part in this story but it doesn't have the starring role. This time, the star is Rachael, not her diagnosis.  It's definitely about a life well-lived.

Of course, there are plenty of moments throughout this book where it's clear that some of the qualities of Autism are affecting events for better or worse but for the most part, Rachael presents as a capable and occasionally "otherworldly" member of society.

If you've ever read a book or seen a film with a lead character who is defined by their autism and thought; "that's a bit excessive. I'm not like that. Maybe I don't have Autism after all..." Then this is the book for you.

It demonstrates how perfectly the traits of autism can hide in individuals, particularly in females on the spectrum.

The book is a breeze to read too because unlike some biographies, it reads more like a novel than a resume. Rachael tells the story with enough description for you to imagine yourself in the places she describes.

I found this book particularly interesting because we were born in the same month of the same year- and only a state away. Having spent many of my childhood summers in Queensland, I found many of the Australian cultural references very familiar.

As the story unfolds we follow Rachael overseas and into a nunnery - and it's a fascinating insight into how well the routine of these places fits with Asperger's syndrome.

In the later chapters, autism begins to play a much bigger role but I don't want to spoil anything- you can read it for yourself.

This book is a great read , particularly for mothers and daughters on the autism spectrum and for those interested in the way autism presents in females.

It's well worth reading and highly recommended.

My Autistic Awakening: Unlocking the Potential for a Life Well Lived by Rachael Lee Harris is published by Rowman & Littlefield and is available on Amazon in Kindle and Hardcover versions. It's also available as an eBook on Google Play.

Rachael Lee Harris is now a psychotherapist who is highly recommended by top Asperger's Syndrome Psychologist Dr . Tony Attwood, You can visit her web page here and her facebook page here

Honesty clause; I was provided with a copy of this book free of charge for review purposes.

Monday, June 8, 2015

Changing Yourself - Part 2 Forget Entitlement, Seek Inner Peace Instead

In my last post I talked about some of the ways you can work towards "changing yourself" to overcome anxiety issues. In today's post I want to look at entitlement.

It's important to remember that these suggestions for "changing yourself" are aimed at improving your own personal well being. They are not aimed at trying to make you "fit in". A person with Asperger's syndrome will always come across differently in social situations and that's okay.  You'll make friends who like you "for your differences", not "in spite of them".

A sense of entitlement is both good and bad
Entitlement is a key ingredient in any civilised society. Without a sense of entitlement, women would never have sought "equality", slaves would never have chased freedom and the poor would never have established the "bare necessities" of life to ensure that governments support their poorer classes. A sense of entitlement drives those in need to push for that which has been denied to them.

Entitlement can have some negative effects too, particularly when the perception of the benefit is flawed. A good example of this is "the American dream" where the entitlement was thought to be a house with modern appliances, a garden, a car, friendly neighbours and a stay-at-home mom who baked cookies.

The "American Dream" was just that, a dream. There was no room for non-white or low-income families and the dream was completely inaccessible to people in high density areas or those without quality employment. Furthermore, the dream did not take the human factor into consideration. Not all housewives were willing to stay at home and bake cookies.

Asperger's Dreams and Entitlement
One of the most common social misconceptions that people with Asperger's frequently develop is the idea that they are entitled to a girlfriend -- and particularly in places like the United States there’s a level of “beauty” that these girlfriends are expected to have. They don’t seem to take personality into account at all.

Over the years, I've met many people with Asperger’s syndrome who have become fixated on the idea that they are supposed to have been “given” a model girlfriend and that if they asked one out and were knocked back, then the girl in question was denying them a “right”.

This is simply not the case. Nobody is entitled to anything like this.

I've seen cases where these feelings of “stolen rights” trigger dangerous behaviour and violent outbursts. It’s one thing to fight for your right to water but it’s entirely different to become violent simply because you believe you have a right to a person.

At best these behaviours will turn more people away from you. Remember that internet rants are forever and even if you delete them, they have a way of surfacing years later in the hands of someone who wants to do you harm. At worst, they can get you into trouble with the law.

Controlling Feelings of Entitlement
There are two steps to overcome a sense of entitlement;

  1. Burst the bubble (realise that what you are chasing isn't real or attainable).
  2. Find ways to feel a sense of connection and achievement.
Feelings of entitlement come, not from yourself but from society. For example; they may come from watching television shows or reading magazine stories where characters possess certain goods such as houses, cars and appliances, have desirable relationships and appear to be living the dream. Even the most "realistic" of media doesn't portray the true reality of a person's life though.

Sometimes the feelings come from seeing others around you who seem to have "perfect lives". Again, you must realise that people will usually only project the positive aspects of their lives -- and that they cover up the negative. As the saying goes, the grass may appear greener on the other side but it rarely ever is.

Most of all though, the happiness that we most often seek, cannot be found by forcing people into relationships or by obtaining possessions. Often people with less wealth have far greater "happiness" than those with more.  True happiness comes from within. 

To gain happiness, you need to work on becoming a happier person. Realise that one of the key drivers of your sadness may be jealousy. As the Disney song says "let it go". Instead, try to be happy for the good fortunes of others. This will make you outwardly more agreeable to others and will make them more inclined to include you in their activities. 

Be grateful for the things that you do have. Whenever I'm feeling bad about myself, I remind myself that I have no right to feel sad or angry about small things -- not when so many other people in the world are clamouring for their next meal. Instead of feeling annoyed about what you don't have, rejoice in the things that you do. Be proud of who you are and your positive inner thoughts will reflect outwards.

People want to be with "happy people". Smiles attract others while frowns generally do not. A smile or a laugh can often be infectious and you'll find that people will smile back at you. 

Finding your inner peace and happiness will not only make you feel better and present a more positive outward appearance but it will also encourage others to want to be with you. It can lead to better things, invitations to social activities, relationships and even better employment prospects.