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.