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.

Wednesday, May 13, 2015

Changing Yourself - Part 1 Be Adventurous, Become Independent

I often find myself writing articles aimed at promoting understanding between people with Asperger's syndrome and people without. Usually my posts explain a particular reaction or an expression and nearly always, I'm asking for partners to be more understanding of differences rather than to make changes to themselves.

Today is going to be different. Today I want to talk to you, to people with Asperger's Syndrome, about how some personal changes can make a real difference to your life.

Asperger's syndrome can present many challenges. In particular, sensitivities to noise, smell and light can make it very difficult to perform "normal everyday" tasks. Parenting and teaching styles can also impact how children interact with their peers and their environment on a permanent basis.

A child who is "mollycoddled" may grow up to be less adventurous than his peers. He may be less inclined to take risks and more inclined to follow routines. He may even begin to develop dependencies on objects, for example a "medical kit" and may become unable to leave the house without following a specific routine and taking specific objects.

In children with Asperger's syndrome, this reliance upon routine is much stronger and has a good chance of following them into adulthood.

This results in fearful and often "housebound" adults.

Obviously, adults with these issues tend to find it difficult to work and to relate to others. They may also need to take more time off than others in the same jobs and they may be unable to cope with even low amounts of stress. This in turn makes it harder for them to find a job, or to keep one. Of course, in the long run, money problems often lead to independence problems.

It's a vicious cycle.

A Little Disclaiming 
I think it would be very easy for someone to read between the lines here and assume that I'm suggesting that I'm talking about causation. That parenting a certain way "causes autism". It doesn't. There was a theory for this called "refrigerator mothers". It's wrong. I'm not saying that anything causes anything.  

I'm trying to suggest that we may be able to reduce the intensity of some of these issues with a little "exercise". I don't expect that this will work in all cases but surely it's worth a try.

Making Changes
If you're a parent and the person with increasing anxiety is a child then you're in a good position to intervene and make a lasting positive change. Some of the things that you can do to help the change are to encourage your child to use public transport to get home from school  (ideally for kids aged 13 and older), join a club with similarly aged individuals, for example;  scouts or join groups who share similar interests such as computing, chess, reading, drama or cinema. It doesn't matter if your child doesn't seem to learn anything from the group,  it's all about developing social skills and the confidence to mingle with others. Of course, if you detect that your child is receiving negative feedback, such as bullying, from the mingling, then should not force them to continue. It has to be a positive experience.

These options are good if you're an adult too. If you're not ready for work then at least get involved in either volunteer or educational opportunities. If you're strapped for cash, remember that taking a walk around your neighbourhood costs nothing.  The worst thing that you can do is to stay at home and avoid contact with others. 

Confidence and social contact are like muscles. once you stop exercising them, they quickly grow weaker.

Friday, May 1, 2015

Book Review: Temple Talks... about Autism and Sensory Issues by Temple Grandin

Temple Grandin is essentially the "mother" of modern autism. She's arguably the person most responsible for the recognition of autism as a condition which can not only be "lived with" but which provides benefits not otherwise found in society.

Who is Temple Grandin?
If you're wondering who Temple Grandin is, I'd like to direct your attention to the excellent 2010 HBO film starring Claire Danes. It's well worth a watch and will give you a great understanding and appreciation of Temple's place in the world of autism. You can watch the Trailer for the film here.

Temple Talks
You can't get very far in autism research without discovering Temple Grandin and I think it's only fair to say that everyone connected to autism, to Asperger's syndrome or to Sensory processing difficulty should read at least one Temple Grandin book.

Of course, not everyone is a reader and even among avid readers, it's not always easy to find the time to sit down and read, particularly if you're also a carer for a child on the autism spectrum.

That's where this book comes in handy. At 45 pages of text followed by 75 pages of short questions and answers, this book is a breeze to read and very easy to pick up and put down at a moments notice.

If you have already read one of Temple's other books, such as the excellent "Temple Grandin: The Way I See it" then you probably won't learn anything new here (although this is a handy reference and much easier to carry).

If you haven't read one of Temple's books before then this one is a great place to start. It's packed with information and tips all geared towards helping your child to make the most of the opportunities that life presents. It's mainly aimed at children between the ages of five and about sixteen but there is still information which is relevant to younger children and some discussions, such as driving and working are relevant to adults.

The only quibbles I have are that Temple is very much a product of her time and sometimes her age seems to show with an aversion to technology, and possibly too much focus on "manners" for the modern world. 

These more dated tips are admittedly, given for the right reasons but as Temple hasn't raised kids herself she doesn't anticipate the "backlash" that kids of today have or the lack of modern options for dealing with it.

Quibbles aside, this is an excellent book, which is particularly well suited to busy parents and those less enthusiastic about reading.

It's also one of those books that belongs in the waiting rooms of developmental paediatricians everywhere because the layout and wonderfully indexed front pages mean that it can be read so quickly or used to randomly jump from one topic to another. It will also answer so many of the most common questions that parent have about raising a child with autism.

Temple Talks... about Autism and Sensory Issues: The World's Leading Expert on Autism Shares Her Advice and Experiences by Dr. Temple Grandin is available from Sensory World and either a paperback or an eBook.

It's a great "first" Temple book.

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

Saturday, February 21, 2015

Taking Ownership of Problems in Your Relationship

Taking ownership of problems is something that is important in every relationship but it's especially important in a relationship where one or more partners have Autism Spectrum Disorders, including Asperger's syndrome. This is because partners with ASDs have low tolerances for specific things, such as certain smells, sounds, events or arrangements. At the same time, people with ASDs are often the loudest or most disturbing people in a room due to their stimming behaviours or misunderstanding of social "norms".

In this post, aimed at all parts of the relationship (neurotypical, ASD, male and female) I want to provide a tips on ownership which may make the "road" less bumpy

What is meant by "Ownership"?
So often, arguments in relationships include the words;  "You made me do ...."   or "You made me feel....".

It's not true though, unless your partner is a mad scientist with access to your brain, a magician, a hypnotist or a sociopath -- in which case, getting out of the relationship isn't such a bad idea.

Nobody can make anyone DO or FEEL anything. You do it to yourself. 

Ownership means that you recognize that YOU are responsible for YOUR actions and YOUR feelings. 

Once you accept this, you can then move on to deciding how and why you feel or act a certain way. For example, you might find yourself being upset because the house is messy.  It's easy to blame your partner for not cleaning but then they may not feel as strongly about cleanliness as you do. The reason that you're upset isn't because they don't keep it clean but because you value cleanliness.

There are three simple solutions to this particular problem;

  1. You take more responsibility for cleaning, which would probably involve cleaning up after your partner more and may lead to feelings of resentment.
  2. You reduce your personal reliance upon cleaning and accept the fact that things will never be entirely 100% clean and tidy.
  3. You find a way, perhaps via incentive, bribe, agreement or even denial of services to convince your partner to do more of the work.  For example, if your partner relies upon you to do ironing, you might suggest that ironing won't happen unless they do their share of cleaning.

Owning the Problem
When my wife and I were first married, some of my OCD quirks were quite noticeable. For example, all of my books, CDs etc were in strict alphabetical order. My wife liked playing CDs but she would never put them back in the right place.  We got around the problem in two ways.

First, I realized that I was the one who valued order, not my wife. I told her that if it wasn't obvious where the CD should go that she should just leave it out for me to put away. Thus, I owned the problem. 

Going a step further though, I bought blank CD cases and fill them with letters on the spine (A-Z).  This made it easier to find where things should go but more importantly, it occupied blank spaces. We got to the point where my wife would take a CD out and when she went to return it, there was only one empty slot where it could go.

This made things easy for her -- and it reduced the problems with my personal issues with order.

Taking the Problems Away

One of the classic and most often cited relationship problems is about toothpaste and whether to squeeze it from the middle or from the end.

This problem dates back to the days of aluminum toothpaste tubes and is less relevant today however the solution is still a good one.

Clearly one person in the relationship cares about the problem more than the other, so... have two toothpaste tubes and have the fussy person responsible for putting theirs away when finished.

Having it out of sight will ensure that their partner picks up the tube that they are meant to be using.

Walking away from Unimportant Issues
The other half of problem ownership is the dis-ownership of unimportant problems. There are many times when your partner will want to involve you in decisions in which you really don't have an interest. As you get involved in the decision, you'll find yourself making a choice and then wanting to stick to it.

Picking floor tiles or room colors or household items are obvious examples of this, as is picking Hi-Fi equipment or cars with non-technical partners.

The problem is that once you've made a choice, and your partner has disagreed, the argument becomes one which is less about the choice you've made and more about the fact that your partner asked for your advice and then ignored it.  It's perfectly normal to feel some resentment about this.

One of the best things that you can do is recognize that this is a choice that you do not have an interest in and refrain from making a choice in the first place.

Non-Ownership of problems that are not important to you is just as important as ownership of problems which are. 

Sunday, February 15, 2015

How Asperger's Syndrome and Simple Miscommunication can Quickly Turn to Tragedy

Earlier this week in Sydney, our police fatally shot a woman who was wielding a knife. It later transpired that she had Asperger's syndrome. I didn't comment on it at the time as I was quite busy at work -- and I was also awaiting the backlash of comments to the effect that; 

"the police could have shot her in the leg or tasered or tackled her rather than shooting to kill, therefore ALL police are bad"


"all people with Asperger's syndrome can become knife wielding maniacs"

To my surprise and delight, those responses weren't forthcoming.  

Instead our media mainly discussed the difficulties that police face in situations like this and the problems that people with Asperger's syndrome have when it comes to understanding police direction. It was a very mature response from our media.

I'm not going to go over things here because I didn't know Courtney, suffice to say that my heart goes out to Courtney Topic's family. It was real tragedy and I wish them all best in the long road of coming to terms with it.

Moving Forward.
What I do want to do however, is to recount a police-experience of my own in the hope that it advances the understanding of how people with Asperger's syndrome can can get those vital and seemingly obvious police communications so wrong.

The event took place about twenty years ago during my part-time university days. I was driving home late one night when the police radar caught me speeding.  In those days before speed cameras, the police car had to give chase. I was pretty focused on driving home and I believe that they chased me for a couple of kilometers before I even realized that they were there. I pulled into the extreme outer lane and slowed (but not stopped) to let them pass. It was probably another kilometer before I understood that I wasn't in the way of their journey, I was their target.

Needless to say, by the time they got the desired response out of me, I suspect that they were probably already more than a little annoyed. 

As I pulled over, I began to develop a bit of a panic, not a full on meltdown, though it might not have taken much but a panic nevertheless.. I have difficulty dealing with authority figures, not just police but all kinds. For example, I've always found talking to the CEO's of various companies I've worked for to be extremely harrowing and confrontational. It's not unusual and I frequently experience an alarming loss of executive functioning when I'm face-to-face with authority figures, resulting in poor on-the-spot decision making.

As I stopped the car, my head began to flood with thoughts, chief among them was my own lack of resources at the time.  I didn't want to get a speeding fine because I didn't have much money left. I also remembered a TV show which had been aired about 10 years previously.

The show was by Allan Pease and it was on "Body Language". There was a whole section in there on talking to superiors in a way that minimized their aggression.

From memory, it said to ensure that your body was in a lower position and to go to them, rather than making them come to you. Thus allowing them to remain behind their "powerful desk". 

Naturally, I decided to apply to this situation.

Unfortunately, the police had parked quite a way behind me -- now that I think about it, it's probably some sort of Police procedure. They were also taking their time getting out -- again, now that I think about it, they were probably "running my plates".  I decided that I'd better hurry if I was to cover the distance and get to them before they came to me.

I sprang from the car and hurried towards them.  They shouted something but of course, being deaf (and focused on the task) I couldn't hear them -- no matter, I was sure I'd hear when I got closer.  Their doors started opening "damn", I thought, "I'm running out of time".  I increased my pace....

Instead of getting out, the police crouched down behind their doors.  They shouted again but I couldn't hear. It was dark too and they had headlights on, so I couldn't really see what was happening. Finally as I drew very near, I realized that they were shouting STOP! and then I realized that they had drawn their weapons.

The Aftermath
I can't remember a great deal about the rest of the night aside from the fact that the police were very annoyed with me. They asked me why I reacted the way I did as I said that I was trying to save them from having to walk to me. They were still very suspicious but I couldn't tell them about the psychology because that would give away my "advantage".

In the end I was fined, I lost points off my licence and they conducted a very intensive search of my car. They were most disappointed (and confused) that they didn't find anything suspicious there.

Of course, after the fact, I can see how my best intentions may have seemed threatening but at the time, from my point of view, it was the police who escalated things out of control. One of the things that people with Asperger's syndrome often do is assume that others can understand what is in their minds without actually communicating.

I was lucky that day that the police officers involved were calmer than I.  Sometimes, even the slightest miscommunication can end in tragedy.