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 Amazon.as 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"

or 

"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.

Danger....
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. 

Friday, February 13, 2015

A Door to Advocacy and Leadership for Asperger’s and a Special Kind of Fame

This is a re-post of an article from September 2010 for "SOS Research Blog" which was on a site which no longer exists. The SOS project eventually became Special-Ism which is a site maintained by a group of bloggers to provide insights into support for children with special needs. This post has been lightly edited from the original content.

You can read all of my Special-Ism articles on their site here.

You can also download a free eBook (Volume 1 of my collected posts), from Google Books or directly in ePub, PDF or mobi Formats.

 - Gavin Bollard January 2015.

This post is part of the series titled “When One Door Closes, Another Door Opens,” where people reveal how their paths have changed since a child with special needs has entered their lives.
~Danette Schott (SOS Research Blog)


We all have closed doors.

I grew up being told by supportive grandparents that I’d be something special someday. They bandied around with ridiculous job titles such as “Prime Minister” even though I've never shown any interest in politics. Gullibly, I believed them. When my good grades and general performance didn't attract attention, I merely assumed that eventually it would. Eventually my famous destiny would come calling. 

I’m still waiting.

As time went on, I realised that I was getting too old to make major breakthroughs. I began to pin my hopes on my children being famous and then suddenly, out of the blue, special needs slammed that door shut completely. First one son was diagnosed with Asperger’s, Attention Deficit Hyperactivity Disorder-I (ADHD-I) and Nonverbal Learning Disorder (NVLD), then the other received high-functioning autism (HFA).

It was difficult coming to terms with the fact that both of my offspring had limitations on them. I’d often cited my own deafness as the target of blame for my mediocre career and now suddenly, my children were having their futures taken away.

I could have given up then. I’m sure I considered it for a time.

As I began trying to get to the root of my children’s “problem” in my need to understand everything about it, I was unaware of the transformation taking place. The more time I spent researching my son’s condition, the more I learnt about myself. Eventually it became clear that I shared my son’s condition (Asperger’s) and more importantly, I discovered that I’d thrived with it.

Far from being a limiting factor in my life, Asperger’s has made me who I am. I have a right to be proud of my accomplishments. As for fame… well, fame really just isn't important.

I stopped thinking about my failure to achieve impossible things. They were never actually dreams or ambitions of mine after all. Instead I began to look at how I was changing as a person. How I was becoming more accepting, more knowledgeable and more a part of my children’s lives. I began to see that these small successes were far more important than my “greater failures”. As I began to accept myself, so too, I began to accept my children for who they are.

These days, I do a lot of things with my children but I also find myself looking out for other unlikely heroes too. I'm trying, via advocacy, to bring a greater understanding of Asperger’s Syndrome to the world – and I think I'm succeeding. This time, I'm not trying to do things alone but in concert with hundreds of bloggers around the world. It’s not about fame, it’s about helping – and it’s about being a part of something great.

When the door to more traditional extra-curricular activities, such as soccer, was closed to my children, I sought an alternative. It was scouts. Instead of having training nights and Saturdays which are focused on the need to keep running constantly – something my children have problems with. They now have a huge variety of activities. Every night is different.

I followed my children through the door which had opened. By becoming a scout leader, I was able to help them keep up. I began to see the differences between my children and the group and I began to work on reducing the social impact of those differences. At the same time, I discovered other children in the group who could use a little help.

During my time as a cub scout leader, I made a difference to the lives of many children. There was always a place for special needs children in my pack. We actually had “differently-abled” nights where my pack got to learn about how differences can make life difficult for some people – and how their actions can help to make their lives more enjoyable.

It’s more than simple understanding and acceptance though. I would reward cubs in my pack when I saw them helping others and it always brought a tear to my eye when one jumped up and run over to help another who obviously could use some assistance.

Acceptance starts with the self and my children accept themselves for who they are. They accept others for themselves too. Their limitations no longer confine them, they simply point the way towards other doors ... the open doors.


One day, maybe one of my kids will become something famous but for the moment, they are all already something great - and that's enough for me. 

Tuesday, February 3, 2015

What does having "Mild Asperger's" or "Mild Autism" mean?

Please note: Under the DSM V, the concept of Asperger’s syndrome no longer exists. It is now simply referred to as Autism. Throughout this post, I use the word "Asperger's" because it's more frequently associated with the word "mild" but my comments here apply equally to both Asperger’s syndrome and autism. 


You see it all the time on web forums,  things are going smoothly until a parent somewhere pipes up with the phrase, "I have a son who is mildly Asperger's. ..." and from there on, the group dissolves into two factions. One is continuing to remain loyal to the original purpose of the group, providing support and advice while the other is offended and is either busily discussing the semantics of the word "mildly" or tearing strips off the poor person who used the turn of phrase. It's also a turn of phrase that some people on the spectrum use to refer to themselves although this is much less  common. 

What is "mild Asperger's and why do some parents find it so necessary to use it to describe their children? Why do people with Asperger’s syndrome become so annoyed over the use of the term? What is really being said and what is really needed?  Hopefully this post will answer some of these questions. 


The Binary status of Asperger’s Syndrome 
One of my readers recently said that "saying that you are mildly Asperger's is like saying that you are mildly pregnant". This is a very good analogy. Much like pregnancy, Asperger’s syndrome has a "binary state". It can be on or off, there is no other state.



People's lives can be affected to varying degrees by Asperger’s depending upon various conditions but if you don't have Asperger's now, you're not going to develop it later in life. It may be recognized as a pre-existing undiagnosed condition but you either have it or you don't.

Similarly, if you have Asperger's syndrome now, you may find that over time you learn to mitigate many of the worst symptoms but that doesn't mean that you no longer have Asperger's syndrome. 

Autism and Asperger's syndrome are lifelong conditions. 


What do Parents really mean when they say that their child is "mildly Asperger's" or mildly autistic? 

Parents who refer to their child's condition as mild are generally saying two things;

1. In my opinion, my child seems to be coping better than others with the same label
2. I don't agree with, or haven't fully accepted the label.

Both of these streams of thought are problematic.


Coping Ability 
The ability to cope with anything is not a linear progression.  It’s patchy.  People cope better on some days and worse on others. In the best cases, there’s a small progression towards better coping but even then it’s usually only visible in the long term view of day-to-day “two steps forward, one step back” style progression.

It’s also pretty easy for one particularly bad day to set coping ability right back to zero.


One of the best analogies for understanding the way coping ability varies with kids with Asperger’s syndrome is to think of it as being a similar process to a person coping with depression due to the loss of a loved one.

Some days are better than others. Some days, particularly special days, like birthdays and family gatherings, are worse. On the whole though, there’s a gradual "healing process" at work. For example, comparing special days from one year to another, the impact should ideally lessen… This is similar to the way a child with autism learns to moderate their responses to cope with the world around them.

Of course, a subsequent loss can set everything right back to where it started -- In the case of a child with Autism/Asperger's, this could be a traumatic event, for example a very public meltdown in front of friends, a new bully at school or even just a change of circumstances, such as "moving house".

Coping doesn't mean Healing.
People don’t “heal” from Asperger’s syndrome or autism but they do learn coping skills.  For example, they may learn about a social faux pas which violates social norms and draws unwanted attention.  The first couple of times this happens, it will cause a lot of pain (embarrassment). They may learn to avoid that pain by not repeating the activity.

A good example of this was a boy at my school when I was five. He dropped his pants to his ankles while standing at the public urinal and he had to endure taunts from his peers for months afterwards. Needless to say, he learned that it wasn't the most appropriate behaviour.

This isn't healing, this is simply learning the social norms required to cope with everyday life. 

Parents who look at other people’s children and assume that their child is able to cope with their autism more effectively aren't doing themselves any favours. A child’s ability to cope will greatly depend upon their situations, experience and environmental factors, such as loud music or smells, which are outside of their control.

Coping can’t be ranked because it’s not something linear. It’s situational.


Acceptance of the Label
It’s not essential that a label be accepted in order for a child to get the attention they need, (see my post on Special-ism: When Parents Disagree – Focus on Treatment). It does help however, when discussing matters relating to your child.



Parents who say their child has mild autism or mild Asperger’s however are really saying; “He may have this label, but he is NOT like THEM.  "Them" being “Rain Man” or other “apparently classic” depictions of the label. They’re trying to say; “my child is better” - and they're doing this for their own sake, not for their child.

This is both insulting for others with autism and damaging for the child. It suggests that the parents are very judgemental and that they aren't open to trying behavioural exercises which work for other children on the spectrum.


What is really needed? 
Unfortunately, these types of ignorant comments come across as very insulting to others on the autism spectrum . They can often provoke heated debates about the nature of this "mild" Autism and sometimes these can escalate into arguments or even a refusal to provide support; don't forget that many of the best practitioners in special needs have children on the spectrum - or are on the autism spectrum themselves.

It's understandable that people feel the need to lash out against insulting remarks but this doesn't help the child on the spectrum. They need support and understanding. It doesn't help the parents either as the use of the term "mild " suggests that they're either new to it all, or they're not coping well.

Correction is not needed here, merely gentle coaxing.

It doesn't matter what words parents want to use provided that their child is receiving appropriate early intervention.  Once parents and child are on this path, understanding should follow naturally.

Saturday, January 31, 2015

Article: When Parents Disagree – Focus on Treatment


One of the most common complaints I hear from parents is that the other parent does not believe in the label. It's very common and there are some very good reasons why this is so.  In fact, believe it or not, somewhere between 2004-2005, I was a non-believer. 

My latest article at Special-ism discusses this problem.  It outlines the reasons why this is so common and what to look for in your partner's background.  More importantly though, it points out many of the ways in which you can provide your child with much needed early intervention without the need for a label.

Click on through to read the article at Special-ism.

When Parents Disagree – Focus on Treatment
http://special-ism.com/when-parents-disagree-focus-on-treatment/


Don't forget, you can access all my past articles at Special-ism here.
and you can obtain a free eBook version of my earlier articles via the Google Play store or direct link here.