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.