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.