Sunday, November 30, 2014

Book Review: Sensitive Sam visits the Dentist - written and illustrated by Marla Roth-Fisch


Sensitive Sam visits the Dentist is the second in the Sensitive Sam series. These are great multi-level books which are suitable for reading by young children, parents and professionals. 


The book starts off with a fairly straightforward story about Sam visiting the dentist. It touches on several of his anxieties but eventually he ends up enjoying his visit.

This first section is aimed at very young children and contains easy to understand words and activities. In fact, young children are encouraged to participate in the story by tracing the line that the car travels to the dentist and choosing the flavour of the toothpaste. It's all very engaging.

Along the way, there are numbered hints to parents. These hints refer you to pages in the back of the book, after the story.  They say things like "Show, tell and do. What does a dental hygienist do? Page 23).

Following the story, there are a series of tips for parents, numbered 1-15. As you would expect, the tip on page 23 has a paragraph about dental hygienists.

The last section of the book has quotes, stories and tips on dentist visits from bloggers from all around the world. There are some very good tips there and many that I'll be putting in place with my own kids.

All in all, it's a great book and is highly recommended.

Sensitive Sam visits the Dentist is a short book jam packed with tips for parents and professionals. If nothing else, every single dental surgery should have  a copy.

If your child has problems with the dentist, then this is the book to get. 


Sensitive Sam visits the Dentist - written and illustrated by Marla Roth-Fisch is available from Future Horizons publishing and from Amazon.

Honesty Clause: I received a copy of this book free of charge for review purposes.

Wednesday, November 19, 2014

Article: Meltdown? Reduce Sensory Input, Reduce the Intensity

My latest post over at Special-ism is about reducing the intensity of meltdowns by reducing the sensory input.  Hop over to Special-ism for a read.


Meltdown? Reduce Sensory Input, Reduce the Intensity
by Gavin Bollard
http://special-ism.com/meltdown-reduce-sensory-input-reduce-the-intensity/


Over the years, I've written quite a bit about meltdowns on this blog. For a long while, they were very regular events in my life, they "owned" me and I hated them.  They followed me from early childhood through to adulthood.

Now they're quite rare (for me personally), though they're not rare in our house. I have two kids on the spectrum and the next meltdown is never very far away.



Here's a selection of my previous posts on meltdowns;




Sunday, November 9, 2014

Why it is important to keep fighting for Autism Rights

This has been a very busy week in terms of autism rights and there have been a number of incidents which demonstrate very clearly that people with autism are not being treated with the respect that they deserve. 

History is full of stories of groups of individuals who were victimized for physical, economic, social or theological characteristics and while we still have a long way to go, constantly pointing out these issues has proven to be the best way to make progress towards an all-inclusive society. 

Autism is yet another of these groups but it's still in infancy. At this point, we're still fighting for acceptance and the concept of true equality hasn't really been considered.

It's important for us to continue to point out oversights and to correct thinking patterns which can whenever they arise.

The Murder of London McCabe
Last week, London McCabe, a six year old with autism who "loved hats, loved his parents, and was ‘all smiles'." was thrown from the Yaquina Bay Bridge in Newport by his mother. It's not the first time that a parent has murdered their child and it won't be the last however our reactions to this event may well help to encourage or discourage copycats.


On the one hand, there are many people calling for more support for parents (a good thing) and making excuses for his mother Jillian (a bad thing).

On the other hand, there are people referring to this as a murder and campaigning for justice (a good thing) and rights for people with autism (also a good thing).

Sure, we'd all like to be empathetic and see the world for the shades of grey that it is but unfortunately to do so is to miscarry justice and to encourage more parents to harm their children. Sometimes you just have to carry justice swiftly and harshly for the greater good.

London McCabe joins a long list of children with autism who were murdered by parents or caregivers; Rylan Rochester (6 months), Alex Spourdalakis (14), Robert Robinson (16), Kenneth Holmes (12), Jude Mirra (8), Daniel Corby (4), Benjamin Barnhard (13), George Hodgins (22), Randle Barrow (8) and Katherine McCarron (4). May they rest in peace. 


The Event on Sunrise News 7 Australia
Like many news services around the world today, Australia has a morning television news in Sydney which interacts quite a bit with the general public. There was a report from a mother this week who took her teenage son with autism to see the news being filmed.

Her son stood next to a reporter (and didn't behave out of the ordinary apart from being obviously thrilled to be on the news).  Back in the studio, newsreader David Koch (Kochie) made a derogatory remark about the person standing next to the reporter and told him live on air, to get rid of him;

"I think we've got one shonk on your left shoulder. Give him a quick whack and tell him to nick off you idiot".

The video of the event appeared in the sunrise news feed but was quickly removed. Thanks to the anonymous reader who found it again.  It can be seen here, with the first appearance of the boy with autism at 1.40 and David's comment coming in at about 1.57.



To my knowledge, no apologies were offered.


and finally, and example of someone doing it right...
This was too good not to share (I love Doctor Who after all).  Current Doctor Peter Capaldi took time out from his busy schedule to record a special message for Thomas, a nine year old boy with autism who had just lost his grandmother. It's a very good message, pitched at exactly the right level and with a lot of care and concern.


Thomas's father commented that “This arrived just before Thomas’ nanny’s funeral and helped him to deal with his grief in a profound way. Thank you Peter so much.”

Sunday, November 2, 2014

Why is Empathy so hard for people with Asperger's Syndrome?

Empathy is often the worst and hardest part of any relationship with a person with Asperger's syndrome. You might feel that your partner lacks empathy entirely but if you could see inside their mind, you might be surprised to find that they are far more emotional than you are.  Obviously this isn't the case for everyone as we are all individuals but quite often people who display very little empathy are actually full of emotion.

So why then, is it so difficult for people with Asperger's sympathy to "show a little empathy"?

There are three major problems relating to empathy that can really cause problems for people with Asperger's syndrome;


Identifying Your Emotional State
People with Asperger's syndrome have a huge amount of trouble determining your emotional state if you don't tell them specifically how you feel.  If you're crying, then most likely you're sad.  If you have a "sad face" on but no actual tears, then who knows.  

People in an upset state of mind often turn and hide their face. This makes their body language even harder to read. People with Asperger's syndrome often avoid making eye contact and frequently avoid looking at faces.  If that's the case then there's a pretty good chance that your partner with Asperger's syndrome may have no idea that you are unhappy. This is particularly true if you use a lot of sarcasm or if you wave them away with "I'm ok" or "it's FINE!"

If you start shouting, then your partner might realize that you're angry but if you're simmering or crossing your arms or doing the "angry look", it won't be noticed. 

Nobody can offer decent empathy if they don't know what is going on with the other person in their relationship. 


Providing What is Required
The needs of a person with Asperger's syndrome will be quite different from the needs of a neurotypical (normal) person.  If things are tough, people with Asperger's syndrome need to be left alone. If they're angry, they need to be left alone. If they have a problem, they usually need to deal with it by themselves. 

Neurotypical people, particularly females, need to hug and talk things out. People with Asperger's syndrome need exactly the opposite. 

For example, if a person with Asperger's syndrome goes to a hospital, then most likely they will just want to be left alone. I can remember being in hospital on a few occasions and feeling quite annoyed with my wife or my mother because they wouldn't take the hints to leave my side.  I struggled with myself because I was feeling overloaded but I didn't want to be rude. The more they stayed and talked and touched me the more stressed I became. I think that on some occasions I snapped and they went off in a huff, feeling like I'd rejected them.

Years later, my wife was in hospital and I paid her a visit and stayed and chatted a while but after a couple of hours I started to leave. After all, I knew that's what she'd want (because that's what I wanted). She became quite angry because she felt I just wanted to go and get on with my life but really I was giving her exactly what I'd need in the situation.

Sometimes because our needs conflict so much, things which look very unempathetic and self-centered are actually intended to be empathetic and caring.  


Avoiding the Urge to Fix things
People with Asperger's syndrome tend to be fixers.  They often believe that problems are there to be solved and rather than sitting around and talking them through with sad faces on, we plan and then we fix. 

It's taken me a long time to realize that sometimes my wife doesn't want me to fix things. She just wants me to understand her position and agree that she's going through a hard time. To us, this is the same as having our car run out of gas near a petrol (gas) station -- and then instead of filling it up, we stand around and shake our heads and rub and hug the car. 

It's completely crazy to us -- it makes no sense at all. 

Sometimes what others need for empathy is just so crazy for us that we can't bring ourselves to do what is wanted. Sometimes it's so reaches the point of being so crazy or weird that it becomes a little funny and we find ourselves smiling or laughing at terrible situations. 

Sometimes when things can't be fixed we start becoming agitated. Instead of being huggy or listening, we find ourselves pacing the room, becoming annoyed or simply dropping the subject altogether and finding something else to do. This will usually be related to our special interest because this interest takes our mind off things and protects us from the outside world.  

If your partner with Asperger's syndrome appears to be ignoring your feelings in favour of reading a book, watching TV or playing a computer game, it might not be ignorance, it might simply be that they've decided that the problem you face cannot be "fixed".

People with Asperger's syndrome generally respond to their problems by "fixing" them. Empathetic responses don't come naturally. It doesn't mean that they can't provide them but it does mean that they often need reminding when the urge to fix things kicks in.


Helping your Partner with Asperger's Syndrome to Show Empathy
The best way to help your partner with Asperger's to show empathy is to ensure that they understand exactly how you're feeling and what you need. You might do this by saying;

"I don't want you to fix this, I just need you to stay by my side and tell me that you understand how I feel and that you feel sad about it too".

At first, this will feel wrong, because after all you're telling your partner what to do rather than having them figure it out for themselves. You might consider this to be "cheating" because you want those feelings to come from within.  This is not cheating though, other people can read your body language but your partner may not be able to.  If anything, then telling directly will simply be "leveling the playing field" to give them a chance to respond.

The more often that you communicate in this way, the more your partner with Asperger's syndrome will come to understand your needs. You may find yourself in the future needing only to say, "I'm feeling sad" in order for your partner to start giving you the sort of empathy you asked for last time you were sad.

One final point. Now that you understand how different your partner's needs are in difficult times, do you think that you can provide them with what they need instead of what you need when the hit tough times? After all, this partner thing needs to work both ways. 

Saturday, October 4, 2014

Article: Change Your Child’s Behavior to Attract Less Attention

My latest post out at Special-ism is about changing your child's behavior to attract less attention. I'm always encouraging people within the autism community to be proud of themselves and to be themselves.  The problem is that behavior that is too far "outside the norm" can draw a lot of unwanted attention.

The best thing to do is to tread a cautious middle-ground and that's the point of the post, to show ways that normal autistic behaviors can be modified to become less noticeable.

Hop over to Special-ism for a read;

Change Your Child’s Behavior to Attract Less Attention
http://special-ism.com/change-your-childs-behavior-to-attract-less-attention/

Friday, September 19, 2014

Asperger's Syndrome and Religion

One of the strange things that I've noticed about people with Asperger's syndrome is that when it comes to religion, they often fall into the categories of all or nothing.

Of course, there's a plethora of individuality out there and not all people with Asperger's syndrome sit at extremes but there does seem to be a bit of a trend nevertheless.

The aim of this post is to highlight some general themes and trends that I've seen. I'm not sure how much of what I've seen is down to Asperger's versus general opinions on religion but I'll be happy to hear your thoughts in the comments.


The Highly Religious 
A highly religious person with Asperger's syndrome tends to be focussed mainly on the inward aspects of religion, such as prayer and good moral values. They may spend a lot of time perusing, memorising and quoting religious texts.

I've noted that direct involvement with the church, synagogue or clergy tends to be in the form of very small on-topic discussions rather than fully-fledged social events. This is only natural given that people with Asperger's usually feel uncomfortable in crowded social settings.

One darker aspect that I have also seen is; dubious morality where a person holds true to certain moral aspects of their religion, for example, covering their eyes during risqué scenes in a movie but then proceeds to accept less savoury experiences, such as paedophilia within their church or bullying, with fewer qualms.

Quite often, these highly religious people become "self-censors" and choose their information sources very carefully. Anything which contradicts their personal take on their own religion is rejected and they pick and choose sources, including people to ensure that only their version is supported.

This is very different behaviour to the normal all-consuming special-interest absorption favoured by people with Asperger's.  


The Atheist
Atheism is rife within the autism community and it seems, at first glance, to be far more widespread in comparison to the ratio of atheist/believer in the wider population.

It's not that these people don't think about God, in fact it's more often a case of "overthinking". Atheists on the autism spectrum quite often lump the image of God in with Santa Claus and the Easter bunny. The physics of it all simply don't add up and coupled with the difficulty of staying still and quiet in church, this drives them away.

The normal rules for special interests apply with atheists on the spectrum and if religion ends up becoming a special interest, you can expect them to delve into historic and scientific texts in order to find evidence.

Atheists with Asperger's syndrome also tend to be more vocal about their beliefs and will happily explain why religion is false to anyone who dares to suggest otherwise. This can sometimes cause social problems, particularly when they are unaware that their comments are causing distress.


The Middle Ground
Of course, not all people with Asperger's are consumed with religion, history or science and there are certainly plenty of people who occupy the middle ground. It just seems to me, that those without an opinion on religion are in the minority.

Monday, August 18, 2014

Choosing a New School for your Child with Asperger's Syndrome

Unless you were lucky enough to enrol your kids in a school which streams kids all the way from kindergarten to college and you remain in the same geographic area throughout these years, you will probably be faced with the prospect of selecting a new school at some point in your child's education.

It's not an easy choice to make under any circumstances but with a child on the autism spectrum, things are a little more complicated.

In this post, I hope to take you through some of the factors that you need to consider;


Qualities of the School
The size of the school is always a difficult choice because on the one hand, you tend to think that your child is less likely to get lost in a smaller school. That the teaching staff will pay more attention to your child and that class sizes will be smaller, allowing more"one-on-one" teaching. There's also the fact that smaller schools aren't so overwhelming for your child. 

Unfortunately though,  smaller schools help your child to be noticed by more than just teachers. Smaller schools seem to attract more bullying issues than larger ones - and they have less places to hide. Smaller schools often have more crowded classrooms than their larger counterparts because there is a lot more pressure on them to accept "just one extra child" in the class.

Larger schools can offer more in terms of lasting friendships because although kids with Autism or Asperger's syndrome can be friends with anyone, "like tends to attract like" and often the best friendships are with other children who are similarly "outcast" or who have similar drives and interests. If you consider that autism rates are currently thought to be around one in eighty-eight and that average class sizes are about  thirty pupils, this means that in a school with two streams (60 kids per year) there is a probability of only one or two kids with autism compared to about three or four in a four stream school. It might not seem like a big deal but in a school catering for six years, this also means the difference between catering for the needs of 12 versus 24 kids with autism.  It means that larger schools are significantly better resourced and that their teaching staff are likely to be much more experienced with autism.

Another point in favour of larger schools is that they often have more diverse subjects, particularly in areas such as woodwork, photography, cookery, and metalwork which require more space and specialised equipment. This means that your child has better chance of finding subjects which pique their special interest. Also, if you child is not academically inclined then a school which has subjects covering trades would be beneficial.  

Different schools have different priorities and focus.  Some schools are very academically focussed which means that if your child is bright, they will flourish.  Of course, you need to bear in mind that schools with this kind of focus are often picky about their students and if you have other children who are less academically inclined, there is a good chance that the school may not accept them. You need to decide whether it is important to you that both of your children to attend the same school. 

Some schools pride themselves on sporting rather than academic achievements.  If you child isn't very sporty, then no matter how academically inclined they are, they may feel out of place.  Some schools are way too focussed on their own reputation and will attempt to suppress the results of children who under-perform. You can usually spot the schools from their reports but sometimes it's not obvious until you get a note home saying that your child doesn't need to sit for a particular exam. 

No matter what, the key is to understand the school, the size, facilities and their teaching aims.


Personal Factors
There are lots of personal factors to consider as well when changing schools;

You need to take into account your child's existing friendships. Your child may not necessarily talk about "friends" but that doesn't mean that your child isn't comfortable with those familiar faces. Before you risk taking these away, you need to assess their value to your child. 

The other side of the coin however is all about "enemies". These are generally bullies or children who simply do not want to associate with your child. If you child feels disturbed by these "enemies" then perhaps a change of schools would be a good thing. 

If your child is transferring to a new school in order to attend higher classes, then presumably the rest of the year-group will be transferring as well. Encourage your child to talk to their friends about where they're transferring to and you should talk to the teachers too.  You'll then be able to decide whether to go to the same school to retain friends or to go to an entirely different school to start afresh. If your child has been the victim of bullies, sometimes starting at a new school in a different area is a very good idea. 

Another thing to consider is whether to send your child to a co-ed or single-gender school.  Some schools are single-gender until the last two years of schooling too. There have been studies which show that girls under-perform in co-ed schools because they're distracted by the boys but that boys over-perform in the same environment.  Depending upon your child's gender and academic disposition, you may want to consider this when selecting a school.  

Of course, the other gender consideration for children with Asperger's syndrome is "relationships". Kids with Aspergers are notoriously poor at initial relationships and have a great deal of difficulty talking to people of different genders. Sending your child to a co-ed school could provide a great deal of social experience which could reduce problems on the dating scene in later years. 

Distance and transport are also important things to consider.  If public transport is involved, you will need to determine whether your child can safely negotiate the trips and ensure that if they miss a train or bus, that they can catch another one. If your child is very impulsive, for example, trains may not be good idea.


Home or Distance Schooling.
I would strongly recommend that parents do not send children with Asperger's syndrome to boarding schools as these make it difficult to monitor them.  Children with Asperger's syndrome need adults that they can trust to put their interests first. In particular, situations such as meltdowns really need parents to intervene on a direct level. Boarding schools tend to deal with these issues internally and will often "cover up" the events.

The other option, home schooling, is particularly suitable for children with Aspergers.  Of course, if you choose to home school, you will need to talk to other parents who are doing this to find out the best methods as surprisingly, they don't involve simply sitting down with books and doing tutorials. Home schooling is very hard work and it's not a commitment that you should undertake without due consideration.

Whatever path you follow, changing schools is not a simple matter. I hope this this post gives you a few things to look out for. 

Saturday, August 9, 2014

Book Review: "Autism, What does it mean to me?" by Catherine Faherty

"Autism... what does it mean to me: A workbook about self-awareness and life lessons for Kids with Autism or Asperger's". Revised and expanded 2nd Edition, by Catherine Faherty.


Autism,  what does it mean to me is a hefty quarto-sized volume of nearly 500 pages but luckily, the print is rather large. It is designed as a workbook for children with autism and it seems to contain questions about pretty much everything that you or your developmental pediatrician could want to ask about your child.


It's a stunning piece of work covering a vast array of topics ranging from innermost feelings, sensitivity and creativity through to friends, family, school and general emotional well-being.


Each chapter is clearly marked and starts with an introduction to the topic before it segues into a plethora of questions. After the questions, there is specific advice for parents on the various responses and on the topic in general. 

New to the second edition are sections directed at older children, teens and adults which cover some crucial topics such as participating in the IEP, personal safety and depression.


This isn't a book that you will simply read and leave on the shelf, it's a book that will become a type of journal that you and your child will want to carry and refer to for years to come. Some parts of the book will be more suitable for younger children while others are much more suitable for older ones. It's probable that over time, you'll want to revisit your child's answers to questions to determine if things have changed. 

This is most definitely a book that you should take with you when you visit the therapists or practitioners who are looking after your child.


The questions in this book are cleverly posed to make it easier for your child to respond. While there is certainly space for long answers, the majority of the questions can be answered simply by highlighting the most appropriate multiple choice answers. This makes the book much more approachable to even the most writing adverse children.


Throughout the book there are examples drawn from research, from real life and from autism advocates.  In fact, I was stunned and impressed by the extent to which these advocates have been included. It's something that is sorely missing from most books of this type. Many of the illustrations are done by individuals on the autism spectrum and there are pull-out quotes from people on the spectrum of all ages scattered throughout.


I wholeheartedly recommend this book to all families with children on the autism spectrum, particularly those with younger children (of about five years of age) who will be able to get the most out of the entire book. This is also a great book for practitioners in autism and special needs related fields as it contains many great mini questionnaires designed to find out how children on the spectrum really feel - and of course, it's full of useful information about how to respond.


Autism, What does it Mean to Me? is available from Future Horizons Publishing.  

It is also available on Amazon but at the time of writing, they appear to only have the first edition.

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

Friday, August 8, 2014

Article: Is Your Child a "Class Clown" to Gain Acceptance

My latest post over at special-ism is about the dangers of being the class clown.  There's nothing wrong with being "class clown" if you play it safe but sometimes it's not so easy to be safe. 

Click here to read the article.
http://special-ism.com/is-your-child-a-class-clown-to-gain-acceptance/

I was a class clown myself for many years and I still have my homework diaries full of fun commentary (and numerous reprimands from my teachers to prove it.  They were always telling me that "you don't have to be anyone else, just be yourself".  I never understood what they were saying - or why they were harping on about it at school but now it makes a bit more sense.

I even have a great written comment from one teacher which says "Gavin spends too much time making futile attempts to amuse his classmates. I would suggest spending more time be spent in the pursuit of knowledge"

(Yes, it has a grammatical error in it because the teacher had read some unsavoury attempts at humour against himself seconds before writing it -- and he was far from calm).

Thursday, July 24, 2014

Book Review: Crystal Puzzle by Ashley Nance


Crystal Puzzle: Growing Up with a Sister with Asperger's
by Ashley Nance

Crystal Puzzle is a very interesting book which offers a rather different point of view to the usual autism biography story. Normally these books are written by one of three people; the person with Asperger's Syndrome, that person's mother or that person's doctor. 

In this case the book has been written from the point of view of the sister (Ashley) of the person with Asperger's Syndrome (Crystal). 

What makes this approach so interesting is that both Ashley and Crystal grow up through the course of the book and as they do so, their points of view and opinions change. 

Fair Warning
Before I start talking about the book, there are two things which I want to point out;
  1. Christian Language: There are quite a few instances in the book where Ashley talks very openly about religion and a couple of passages feel like sermons.  Since religion is a very personal thing, some people may find these parts a little uncomfortable.

  2. Abelist Language: There are many people who have major issues with the puzzle-piece symbol of autism because it suggests to them that people with autism or Asperger's syndrome are puzzles to be solved or people to be "fixed". Indeed, the notion of "fixing" does make an appearance in this book but not in an overly abelist sense. Nevertheless, some people may find this language a little uncomfortable.
Sisterhood and Acceptance
Crystal Puzzle is very much a book about sisterhood, growing up and acceptance. The story starts with Ashley's first thoughts that her sister is somehow different and moves quickly through the initial diagnosis because as a sibling, she was not made fully aware of her sister's diagnosis until much later.

From there, Ashley's story covers playground friendships and bullying, special needs teachers, sibling rivalries and jealousies before moving on to the dating scene. There is a lot of good information in this section, particularly on female bullying and some of traits of Asperger's syndrome that lend themselves to exploitation.

Along the way Ashley talks openly and honestly about her feelings and her thought processes - some of which seem very unfair and judgmental until you remember the age group she is describing.  Children have a much more black and white view of their world and in any case, autism was far less understood twenty years ago than it is now.

The book is about Crystal's journey to adulthood but it is Ashley's journey that is of the greatest interest. Ashley shows us how non-autistic siblings can be affected by their autistic counterparts and how they can often feel the need to take on the role of "fixer".

The book aims to help siblings realize that they are not to blame for the poor choices made by siblings and ultimately promotes understanding and acceptance over the desire to control and fix individuals.

This is a book which will work well for parents and teachers but is far more suitable for siblings, cousins and best friends of a similar age to the person with Asperger's syndrome or autism. It is in this area that the Christian language works particularly well as there is nothing in the wording or descriptions that could make this book unsuitable for a teen to read. 

The Crystal Puzzle by Ashley Nance is available from Familius as a printed book and from Amazon as a Kindle e-Book.

Honesty clause: I was provide with a review copy of this book free of charge from Familius.com

Thursday, July 10, 2014

Understanding Depression

If you were to do a survey of people on the street, you would probably come away with a general consensus that depression means "feeling sad", an idea which is way off the mark. Questions about the frequency of depression would probably be answered more accurately though as most people would suggest that "everyone feels sad sometimes".

I've talked about depression and Asperger's syndrome before, in the very early days of this blog. Back then I talked about how common it was in people with Asperger's syndrome and what some of the possible causes could be. This time I want to look at what depression is and how to support people who live with it.

What does depression feel like?
It's hard to explain what depression feels like to someone who has never experienced it before but it's something that those of us who have loved ones with depression really need to understand.

Many people describe depression as a kind of "fog", or a hole. It's about living under conditions where everything seems to be negative.  Depression alters a person's perspective so that happy moments are not recognized for what they are and sadder moments are enhanced and deepened by negative thought processes.

For example; if a person with depression has a car crash, then they are likely to become fixated on their car, the bills and how unlucky they are to have had the accident.  A person without depression will still acknowledge the bills but will be happy that they weren't injured in the crash. 

Depression and Self-Harm
While depression can sometimes include recognized forms of self-harm, like cutting, reckless behavior and in extreme cases, suicide, it isn't generally recognized that depression nearly always includes less visible elements of self-harm. The following examples demonstrate some of these;

  • Negative Self Talk; This is quite common with depression. Essentially it involves the depressed person constantly putting themselves down. It may not even be verbalized and could all be "in their head" but regardless, it becomes a form of self-bullying.  This is extremely harmful behavior because just as believing in oneself is one of the keys to success, constant talk of failure will lead to actual failure.

  • Closing down Communication; One of the side-effects of depression is that as other people around you try to help without fully understanding your feelings, they invariably become irritating. This can lead to depressed people ending relationships and friendships, failing to return calls and in some cases even running away from their families.  Many people trying to help people with depression don't realize that they are dealing with depression and instead concentrate on a visible behavior, such as cutting or alcohol abuse. The discussions quickly become critical of the given behavior and instead of providing much needed support, push the person with depression further away - and in some cases, lead them to try to hide symptoms of their depression. In the case of cutting, this often drives people to cut in areas which are less visible to those around them. Closing down communication is actually a very harmful activity.

  • Inactivity; When you're feeling positive, you can take real pleasure from many activities and indeed you can often find the silver lining behind activities which are not so pleasant.  People with depression however will find every activity to be a chore. They will instead attempt to spend time doing nothing . Inactivity causes ones thoughts to turn more inward, about oneself. It means that depressed people spend more time meditating on their depression than actually doing anything about it. It also means that they avoid many activities which could otherwise make them feel better.

  • Turning to Vices; People with depression often turn to vices to use as crutches. These vices could include obvious things like drugs, alcohol, gambling or sex or they could include the less obvious vices. Binge-eating of unhealthy foods particularly chocolates (candy) and ice cream is a common vice. Another is unhealthy interactions on social media; facebook can be bad at times but other sites, like ask.fm and snapchat are far, far worse.  Binge shopping is also a vice, as  is constant partying with intent to forget. Believe it or not, some seemingly positive things such as extreme fitness and over-reliance on church and prayer can also be vices.


How Parents, Relatives & Friends can help people with Depression
One of the hardest things to accept about depression in adults is that you can't help anyone who doesn't want to be helped and you usually can't reach people who are depressed because they've closed down communication.  You can tell a person that they have a problem with alcohol or with an unhealthy attraction to the wrong crowd as much as you like but if they're depressed, chances are that they won't hear or remember a word you say. Even if they do, they're unlikely to acknowledge the problem.

Often, a person with depression has to "hit rock bottom" before they will even acknowledge that a problem exists.

Unfortunately, sometimes problems with depression can continue for years or even decades untreated. Unless a person is considered to be a danger to themselves and others, there's nothing that society can do to intervene.  It's literally their right to be depressed.

There are however a few things you can do;

  • Let others do the talking; If you're the primary caregiver for a person with depression, it's very difficult to prevent yourself from speaking out about their negative behaviors. There is however, a fine line between simply being annoying (nagging about vices) and driving a person away from you.  Speaking out can sometimes ruin friendships and break up families. Sometimes, it's best to just accept what you have and get others to do the speaking out for you. After all, it's less of a problem if a more distant friend is dropped from the relationship.

  • Provide a Safe Haven; If a depressed person does not have anywhere to go, they will leave themselves more open to harm by taking up lodgings in harmful places. To provide a safe haven, you need to keep your home free from stress. Make sure that the depressed person knows that they won't be subject to constant scrutiny and questions about their lifestyle. Again, leave that to others.

  • Become Support, not Rescue; You need the depressed person to actually hit rock-bottom as a consequence of  their actions. This won't happen if you keep rescuing them or supplying them with funding. You need to take a support and safety role, not prevent the inevitable from happening.

  • When the depressed person requests help, help them find it; Eventually your depressed person will realize that they need to seek help, whether that's AA or some other form of rehab, counselling or psychotherapy.  When the depressed person either seeks it themselves or is ordered to report there by authorities, you need to be provide support to help them find the right service and stay the course.


Other Articles
My 2007 series dealing with depression is here;
Apologies for some of the terms (eg: Aspie) in these articles. A lot has changed in the last seven years.

Sunday, July 6, 2014

The Fine Art of Cocooning and why it is important for people with Asperger's Syndrome

One of the "habits" I got into when I was growing up and sleeping in a single bed was the idea of cocooning myself using my doona or eiderdown.  The idea was that you lie down, rock over to one side (so that the blanket falls underneath you, then rock over to the other side (so the blanket gets stuck under there and finally lift your feet so that the blanket covers your feet and you can't move. It was also not uncommon to have the blanket pre-filled with stuffed animals.

When I got older and moved out of home - and even got married, these behaviors persisted (not the stuffed animals part of course) despite my wife's clear dislike of the idea.  I've tried to keep the blankets "normal" but I don't sleep as well. It's only relatively recently that I've realized that this is pretty much an Asperger's behavior.

Asperger's and Touch
I can't say for certain that this is common to all people with Asperger's syndrome but I've heard it from enough people to feel that it probably is the case;

Light touch is really annoying. If someone brushes against me, I can find myself scratching for hours. The feeling of being touched simply doesn't go away.

In the early parts of our marriage, my wife used to wake me sometimes by tickling my feet. It always provoked a negative reaction and I'd jump from the bed and start trying to scratch my feet on carpet, steps etc.  It was a terrible way to wake up. Being cocooned however, prevents accidental light touches.

Self touch is bad too. I can't sleep if one of my body parts is touching another. The same goes for my own breath on a body part. I have to cover my arms to make sure that I don't blow on them.

I can usually sleep with my arms by my side but I can't sleep with my hand touching my face or neck. Sometimes this happens when I'm asleep and sometimes I put my hands under the pillow so that they won't move. Again cocooning solves this problem because it makes your body act as one. It keeps everything together and stops your limbs from moving.

Finally, Hugs are good. I've spoken to many people on the autism spectrum and the majority of them seem to be saying that while light touches are terrible, tight hugs are very soothing. Cocooning is like having a tight hug all night long.

Even in summer, I can't sleep without something on me. In summer though, I swap the blanket for a tightly wrapped sheet.

Are Blankets Better than a Partner?
The whole cocooning thing really annoyed my wife in those early years of marriage and I had to try things "her way" for many years.  As a result, I had big sleep issues during those years. In the end though, I found myself waiting until she fell asleep and then using an extra blanket for the cocooning (and ditching it in the morning).

I was often asked why I needed to cocoon when my wife was in the bed with me and I can understand how it must seem. I can remember being a teenager and thinking how great it would be when I was married because I could just sleep in someone's embrace all night long. The reality of it all though is that this is hot and uncomfortable. The other person's movements disturb you and their breath and snoring can keep you awake all night long.

It's nothing to do with intimacy though and everything to do with touch.

So, if your partner with Asperger's syndrome makes a cocoon, don't take it personally. It's just the way that he or she likes to sleep. It doesn't mean that they don't want to be intimate, simply that they want to ensure that they have a good night's sleep.

Friday, June 13, 2014

Book Review: "Born to Fly: Living with Autism" by Mary Anne Napper

Born to fly is a novella based on the methods and life of Cath McCarthy, a mothercraft nurse with experience taking care of "emotionally detached" children. It's clear from the outset that names and ages have been changed and that many of the background descriptions are fictional but that the methods and responses are not.

The novella format makes this story interesting and very easy to read. It can be read as a period drama with a very helpful message.

The story is told as a story within a story, essentially a journalist interviewing Ms McCarthy.

It starts in rural Australia in 1946 with the birth of Jamie, a boy who is later diagnosed with "gross mental deficiency", a term used before autism was widely accepted.

His parents are told by their doctor that "there can be no correction or improvement in his behaviour. He will never walk, talk or feed himself" and Jamie is committed to an asylum for the rest of his life.

To say more would ruin an amazing story but Jamie's story might have ended there had it not been for the appointment of a temporary nanny whose real life "miracles" would put Mary Poppins to shame.

Born to fly is an amazing and emotional book which sheds a great deal of light on the way things used to be done and highlights methods which are still effective today.

I tried to take this book slowly to savour it but it was so good that I blazed my way through it in two days (and even then, only because I was required to stop reading for family time).

I can't recommend thus book highly enough. It is suitable for anyone who wants a great uplifting read but it would be an especially great treasure to give someone who has just received news about their child.

You can read the press release for Born to Fly here.

Born to fly is currently available in paperback with an eBook due in late 2014. You can purchase it from the website at http://www.borntofly-livingwithautism.com.au/.

Money from the sales of paperback copies of this book go to Autism Spectrum Australia (ASPECT).


Honesty clause: I was given a copy of this book for review purposes free of charge.

Saturday, May 10, 2014

How to help your Child with Asperger's Syndrome to Make Friends

"Who did you play with at school today?" Mother asks to which the the answer is a mumbled, "Nobody..." It's one of the most common problems faced by children with Asperger's syndrome and their parents.

Making friends is not easy - keeping friends is even harder. Back in November, I blogged about my own experience growing up and making friends but this time I want to offer some tips and advice for parents of children who are struggling with the whole friendship thing.


Getting Help Recognizing Friends
The idea of friend-making relies on a number of steps which are not necessarily instinctive in children with Asperger's syndrome. The first step of friendship is recognition, a step which contains two parts; facial recognition and name recognition.

Usually the former comes naturally although some children have "face blindness" and some have recognition difficulties when others change their hairstyle or other aspects of appearance. There were times when I was growing up that I didn't realize that someone I was friends with a year prior was the same person who had just walked up and talked to me.

Sometimes, my mother had to intervene and say "hey, do you remember Aaron, you played soccer with him all last year..." Sometimes I'd reply that "no, that was a different Aaron" but it would get me thinking and often her prompts would enable me to get on with re-making friends.  

Name recognition is much more difficult and it's not uncommon for some children to go months without learning their teacher's name, let alone the names of their classmates.  One particular problem that I had was that I was always so cautious of getting names wrong that I wouldn't take a risk.  I might have had a fairly good idea of the teacher's name but I'd never say it out loud in case I got it wrong.

That was something that it took my mother a while to grasp but eventually she started saying and writing my teacher's names for me until I felt comfortable with them.


Why Names are Important
One of the most awkward things that can happen is to be caught out not knowing someone's name. My youngest used to play with a boy every single day at preschool. They were great friends and apparently this boy used to talk about my son by name every single day at home. One day, when my wife was picking him up, she asked what this particular boy's name was and our son replied, "I don't know!"  This drew a very emotional response from his mother who was standing nearby.

Apparently all they heard at home was our son's name and yet our son didn't even know their son's name. It didn't occur to this mother that our son didn't need to know a name to have a great friendship.


Learning Names
One good exercise is to use the class photos to help your child learn names. In fact, it's worthwhile keeping a copy of those photos near the place where you and your child do homework and discuss school; or perhaps near the dinner table. A good aim is to learn one or two names per night. Do this randomly, rather than starting at the beginning and working through to the end. This ensures that your child is associating names to faces rather than learning a list by rote. For best results, start by asking your child to pick out the kids who he plays with - or who are in his class. You might also want to ask him to point out bullies and mean kids in the photo, or kids with similar interests.

Learning names and putting names to faces is one of the most important parts of making friends.



Finding Similar Interests
One of the best ways to help your child with Aspergers find friends is to locate friends with similar interests.  To make this process easier, give your child themed objects that support his or her interests. For exampele, if they like football, or a particular football team, then try to send them to school with "branded" objects like pencil cases, book coverings and if uniforms are not a requirement at your school, themed outfits.  Take care to ensure that the branding is age-appropriate.  Sending a 14 year old to school with Sponge-bob themed materials might attract unwanted attention from bullies.

When your child comes home, ask them who commented on their themed materials and look for positive and/or repeated comments over the course of days. Your child might not necessarily find their friends without a little help from you, so be prepared to pull a few strings or suggest that your child speaks to a particular child who seems to share his interests.


Organizing Play dates
If a shared interest becomes apparent, consider organizing a play date. If your child isn't able to pass messages successfully, you might want to contact his teachers for assistance. They won't be able to give you another child's phone number but they should be able to pass yours on, should you authorize it.

When organizing play dates, make sure that you only have one child visitor. Inviting two friends at once carries the risk that the two visitors will play together and exclude your child. If you have two children, then it's best to get them to invite one friend each so that one of your children doesn't "steal" the friend intended for the other.

If you're having a play date away from home, try to pick places which don't have other children - or at least don't have a high likelihood of having a mutual friend attend.  Parks for example, are full of other kids and could result in your play date being "hijacked" by other friends who just happen to be playing nearby.

Be sure to invite the other child's parents to stay during the play date.  Some parents like to drop and run but others feel the need to keep a watchful eye on their child in new situations. This is especially the case when it comes to mixed gender play dates.  These might seem unusual but if you have a boy with no friends who relates better to girls, then it's better for him to have a play date with a girl than with nobody.

After the play date, watch for signs that your child is playing with his new friend - or if not, ask your child why not. Your child might need a little advice on how to keep the friendship going.

Try not to get too caught up in reciprocal arrangements. Some parents don't handle children well and don't reciprocate on play dates. Sometimes they invite your child over immediately -- and sometimes they don't invite your child over at all.

This in itself isn't a problem unless your child reports on more than one occasion that another child was invited or that a birthday party was held with several classmates attending, and he wasn't invited.

If that happens, it's often better all round if you look for other friends rather than "flogging a dead horse".

Sometimes these things work out and sometimes they don't.  

Next time, I'll look at ways to help your child to keep their friends.

Thursday, April 3, 2014

How to do more for families with autism than just being "aware" of it.

The idea of an Autism "Awareness" day is fraught with problems. It suggests that people aren't even aware that autism exists, It's a very scary thought. It puts autism far behind most other forms of  disability.  There is no problem with the acceptance of blindness or deafness, of people with missing or damaged limbs or indeed, of most other mental and physical conditions. 

People have no difficulty believing in "invisible" (at first) issues like cancer, AIDS or MS but for some reason, the entire autism spectrum is subject to scrutiny. Everything from ADHD, to Aspergers to Autism is disbelieved.


Raising Awareness and Blue Light Bulbs
Raising awareness is a nice little idea which effectively means that people get to post little blue statuses or celebrate recognition because they've lobbied to light up national monuments in blue. The problem is that raising awareness of a condition does very little to improve the live of the people who live with it on a daily basis. In fact, in many ways, it could make things worse.

One could argue that raising awareness does less to help people understand about autism and does more to make people aware that there is "yet another group of individuals lobbying the government for handouts". In that sense, maybe raising awareness is not such a good thing.  


Raising Awareness for the Right Reasons
I guess that you could say that raising awareness is an obvious first step but repeating the "awareness" exercise year after year does very little to address the problems. Once awareness has been raised, it's time to move on to other levels of engagement, like recognition, acceptance, then support and finally to issues of equality and sensitivity.

Hopefully I'll get the chance to cover some of those things in other posts.  Right now, I'm still trying to put the concept of "awareness" to bed.


Getting Awareness Right
My point about awareness is that if you're not doing it right, then you probably shouldn't be doing it at all. Raising awareness in a negative manner helps nobody and usually causes significant damage.

At best, poor awareness campaigns simply end up directing funds into the wrong pockets.  At worst, they can turn the tide of public opinion against people with autism, can kick-start campaigns to strip away the rights of those with autism and can lead to "bad science" where anything from food allergies to radiation to immunisation and even to "poor parenting" can be considered to be a cause.


Marketing
Raising awareness - of anything, not just autism, is all about marketing. There needs to be a clear aim to the marketing (hint: it's not to "raise awareness") and there needs to be a target audience (again, not just "anyone"). Without these, anything "spent" on awareness is good time and money down the drain.

Then there's the message.  It can't simply be that "there is this thing called autism". It needs to be far wider than that. If your aim is to educate people then you need to have decided upon exactly what they need to learn. That message needs to be backed up by industry experts and really, for maximum impact, it needs to be supported within the autism community.


What to do for the Blue Day/Month
The current "autism awareness" projects satisfy none of these criteria. They're poor exercises in marketing which benefit nobody.  At some point, I'm sure that the autistic community will sort out a proper autism campaign but in the meantime, here's a few tips straight from my 2013 blue day post;

Don't give any money away, give time instead;

  1. Time spent encouraging or motivating a person with autism.
  2. Time spent giving someone a chance in a job interview
  3. If you're a teacher, Time spent, talking to the class about the positives of autism 
  4. Time spent, providing support to a family with a member with autism (maybe babysitting?)
  5. Time spent as a friend with someone with autism
  6. Time spent, listening to someone with autism

These things cost nothing but they will mean so much more to your "target family" than anything spent on autism "research". You may even find that you get so much back out of the experience that you want to do it more often.

Monday, March 24, 2014

Article: Detect and Deal with Anxiety (on Special-ism)

My latest article on Special-ism which went live about a week or two ago (I've been very busy, sorry) is all about Anxiety.  

Following my review of Dr Edward Aull's book "The Parent's Guide to the Medical World of Autism", last month, I turned my thoughts to Anxiety and the different ways in which it manifests in children and adults. I also thought about the different ways that we deal with anxiety.

Head over to Special-ism to have a read;

Detect and Deal with Anxiety by Gavin Bollard
http://special-ism.com/detect-and-deal-with-anxiety/


Also, while you're there, have a look at Kimberley S. Williams article entitled "Invisible Anxiety: Hiding in the Classroom" which lists some common signs to look out for and ways that parents and teachers can get help and reduce anxiety in the classroom.

Sunday, February 16, 2014

Book Review: The Parent's Guide to the Medical World of Autism by Edward Aull, MD

The Parent's Guide to the Medical World of Autism: A Physician Explains Diagnosis, Medications and Treatments by Edward Aull, MD Behavioral Pediatrician.

It was with great trepidation that I approached this book. I knew that it was an important topic but both the title and the cover make it seem like it would be a very tough read. Much to my surprise though, the first half is light and breezy and the second is too informative to put down.

This is essentially two books in one. The first half of the book is about diagnostic procedures while the second is all about medication.

The author, Dr Aull, is a Behavioral Pediatrician with over 30 years of experience treating and diagnosing patients on the autism spectrum. In this book he draws upon his experience to provide many real-world long-term examples of the effects of various medications.

Diagnostics 
I enjoyed the first half of the book much more than the second because it was much more relatable and because it was far less technical.

Dr Aull talks about the different things that he looks for when patients enter his practice. It was quite interesting to discover that he places such a high emphasis on genetic traits. He talks about observations he makes in a child's parents during the interview and  the questions he asks about the family.

His personal take on Asperger's syndrome is fascinating and he ascribes many of the common symptoms to anxiety, thus increasing the importance of anti-anxiety medications. The book is peppered with stories from his experiences with patients and informed explanations of their "unusual" behavior.

Dr. Aull discusses the importance of fully understanding a diagnosis before prescribing medications and the need to test several medications before settling on one which is most suitable. It was particularly interesting to hear how he uses identical twins to reduce the time required to find the best treatment for a given individual.

Medication
The second half of the book is somewhat drier, dealing with medications and specifics. There is no discussion on the issue of whether or not medication is appropriate. The social questions are not part of the book and it is assumed that a parent reading this book is more concerned with choosing the right medication than a debate about whether or not medication is actually required.

The medication chapters discuss different categories of medications and their use in individuals with Asperger's syndrome before moving on to discussions of medications which can assist with ADHD and sleep issues. There is a glossary at the start of the book but it's not really very comprehensive.  It's probably best that when reading this section you draw out a table and put medications into the various categories that he talks about, for easy reference.

Fortunately, he refers to medications by both their class and trade name.  This makes it easier to identify medications you may have tried. There are some amazing insights into medications in this section which include discussions of how often to use them, how long a testing period should take and what changes parents should expect to see.  There is also some discussion on how different medications interact with each other. 

For example; the discussion on Melatonin, a sleep medication, suggests that children should be given 45 minutes of lights out, no object (eg: ipads, books, toys etc) sleep before parents use the drug. Dr Aull also explains that as a "Natural" drug, Melatonin is less rigidly controlled by standards and as a result, different brands will have very different construction and therefore very different effects.  It's all very good information.

A Very Useful Book
The Parent's Guide to the Medical World of Autism is a fascinating read which is presented in a way that makes its complex topic much easier to digest.

If you're considering medications or if your child is already on medication, it's well worth reading. Beyond that, every developmental pediatrician should have copies available in their waiting rooms particularly as the early sections cover many of the questions that are likely to occur to parents only after they have left the doctor's office.

The Parent's Guide to the Medical World of Autism: A Physician Explains Diagnosis, Medications and Treatments by Edward Aull, MD Behavioral Pediatrician is pretty much a one of a kind book that provides some amazing and helpful unbiased insights into medication. It is available from Future Horizons publishing and Amazon.

Disclaimer
I was provided with a copy of The Parent's Guide to the Medical World of Autism: A Physician Explains Diagnosis, Medications and Treatments by Edward Aull, MD Behavioral Pediatrician free of charge for review purposes.