Tuesday, December 31, 2013

Playing it Safe, Taking Risks, Nagging and Change

One of the things that my wife and I do is watch "expired" TV shows. We're not really fans of the "hanging on week-to-week" problem that accompanies regular TV. Game of Thrones, Walking Dead, Doctor Who and Big Bang Theory are exceptions but even then we sometimes don't watch anything until after the season has ended.  Our series at the moment is a Canadian TV show called Being Erica which ran from 2009 to 2011.  It's sort of like Bridget Jones with  a therapist and time travel (and sadly, a bit less humour).

The lead character is sometimes likeable and sometimes unlikeable and she tends to make choices which more often than not, land her in one predicament or another.  In the episode we watched last night, (hopefully not a bad spoiler) she decided, after being fired from her job, to start a new company on her own.  Her boyfriend who is a rather more cautious fellow tried to talk her out of it because he felt it was too risky. She agreed, then changed her mind, then decided that her relationship was not working because every time she tried to go "outside the box" her boyfriend would push her back in.

It was really interesting that my wife, as usual came down on the girl's side and the idea that her creativity was being "repressed" by her boyfriend.  I, on the other hand agreed that it was a very risky move and felt that if things went wrong, she could end up seriously impacting the quality of life of both of them. I also felt that she was disrespecting the relationship by wanting to break up during the first disagreement - not to mention that at some point, she'd already cheated on the guy.

Jumping Back into Real Life
Now I know this is only a TV show but like all good shows, it has strong parallels in life. I've always been a very cautious person, with the shortest time I've stayed in a job since university being eight years. I've frequently been approached about contracting work but although there are many benefits and I have no doubt about my working abilities, I've always stayed with full time work. I'm risk adverse. My wife has often accused me of this and when we finished building our new house, she said, quite correctly, "if it had been left up to you, we'd still be living in the old house and you wouldn't have changed a thing".

Even when we've been budgeting, my wife will want to factor in a tax cheque or a work bonus or some other non-specific option but I'll always say, "that's not certain, we're only budgeting with things that we KNOW we will have".  There have been times where I've been stressed out or pushed too hard at work (or marriage) and I've felt like leaving but my risk adverse nature always compels me to apologise, compromise and patch things up. Clearly my dedication to "playing it safe" has kept us in a reasonably good position all these years. I think it has made me a better person too.

The question is, does it keep us in our "box"? Does it represent a restriction of our dreams?

I suspect that it does to a certain extent and I suppose that I have to be grateful that I have my wife behind me prodding me to try different things instead of just taking the safe route.

When we first got married, I didn't eat rice, sultanas, carrots, broccoli, pumpkin or sweet potato.  Now I love rice (still hate the other stuff). The aforementioned house wouldn't have been built without her getting behind it and even smaller risks, like changing jobs probably wouldn't have occurred without her nagging (erm, I mean, prodding).

It's something that gets my wife riled up about my mother. My mother nags constantly about things that need to be done. What my wife doesn't realise is that this goes with the territory of raising an aspie child and as my own children grow up, I see this behaviour repeated because only with "nagging" can the proper changes and risks get attention. My mother nags me about things because she knows that without the nagging, I'll forget or even worse, simply "let it slide".  I've often said to my wife that I while I don't like the nagging, I do appreciate it. I'm not sure that she understands this yet but in years to come, I think she will.

This is the way it is with Aspie kids and partners. We like to play it safe but we also need a gentle push to get us to try new things or simply to get things done. Sometimes a gentle push isn't enough. Sometimes we need to be reminded over and over again - and sometimes, though we hate it, we need a hard shove off the edge of the precipice.

We're often risk adverse or as the books say, "change resistant", but it doesn't mean that we can't accept change. Give us enough acceptance and support, make sure that too much doesn't change at once and make sure that we have something solid to cling to and we'll make the change... Eventually.

Saturday, December 7, 2013

Article: Taking things Literally; An Issue that Matters

So, you've been looking through the lists of aspie traits and you've found one called "taking things literally". You read about it and it says, 

'The person may not understand jokes, sarcasm or figures of speech, such as, "It's raining cats and dogs."'

They might look outside for falling animals....

Awwww.... How cute.

So, you ignore it and move on to the  next symptom.

My latest post over at Special-ism looks at an example of what taking things literally really means and why it's important to take this issue seriously;

Hop over and read it;

Taking Things Literally; An Issue that Matters
by Gavin Bollard
http://special-ism.com/why-taking-things-literally-is-an-issue-that-matters/

Friday, November 29, 2013

Aspergers and Inappropriate Gifts and Comments

Well, it's December again and there's bound to be a lot of gifts and socialising, so it seems appropriate to talk about Aspergers and inappropriate gifts and comments...


A lot of people think that those with Asperger's syndrome are insensitive when it comes to gifts. In truth, I think we're actually trying too hard.

One of the things that is drummed into our heads from the time we first start giving and receiving gifts is that "it's the thought that counts".  Consequently, I try very hard when writing cards or choosing gifts, to put a whole lot of thought and personalisation into them. I consider giving soap or other "non-specific" items to be a failure on my part. It means that I haven't put adequate thought into the gift.

Sadly, I think that while lots of people appreciate this level of thought, I end up offending many more people than I would if I just handed over a novelty soap.

Have a look at this clip from the Big Bang Theory; it shows Sheldon, a character generally considered to have Asperger's syndrome, giving a colleague a gift.


In this case, the misstep is fairly obvious; Sheldon is using physical characteristics, such as race, to determine appropriate gifts.

In reality though, the line between giving someone something useful and insulting them is a lot harder to see.  Here are a few things that I've personally done.
  • Giving a person with sight issues an audio book. I thought this was a really insightful choice. I personally love books and I know that I'd be lost if I couldn't read.  I spent over my limit to get an audio book because I thought it would show that I had given the gift some thought.  I didn't see it opened because I'm usually the type of person who leaves a gift quietly and escapes but I assumed that it had gone down well.  It wasn't until I was talking about gifts this year that my wife heard and said; "you did WHAT!!!"  Apparently it wasn't a good thing.

  • Sending a Card Joking about ChristmasMy Christmas cards tend to be very chatty and friendly but since I write like I think, sometimes I write too much.  Again, it was my wife who picked up on the problem after I'd already sent the card. I thought I'd made a joke but I very nearly ended up cancelling Christmas.

  • Taking Bawdy Humour too far
    During my teenage years, my mother and I always enjoyed bawdy jokes but one year, when I couldn't find anything else to buy her, I went a little too far. You can imagine the moment of surprise when she unwrapped a book about safe sex - complete with a condom stapled to the front cover.

  • Given Someone a Compilation without Listening to it
    One year, shortly before Christmas, I decided that I'd had enough of Christmas carols, and I compiled a CD full of politically incorrect songs, starting with South Park's Awesome "Merry F***king Christmas".  I downloaded a whole heap of funny sounding songs, assembled them on CD and gave them out to people.  It wasn't until a day or two later when someone asked "have you listened to those CDs?" that I began to get worried.   It turned out that some of those songs were so bad that I still can't let my thirteen year-old listen to them today.  

Tell Someone about your Ideas
It's in my nature to be secretive about gifts. After all, everyone likes to give surprises - though many people are less enthusiastic about receiving them.  I guess the most important information in this post is that you should find someone that you trust and tell them about your gift - or your message - and why you think it is suitable.

It might save a lot of agony later on.

Friday, November 15, 2013

Asperger's Syndrome and Friendship

It’s taken me most of my adult life to really understand friendship. Even then, I don’t feel like I really understand more than the most basic of concepts. I'm sure it’s easy for other people but for me, the lines between friend, acquaintance, user and colleague are all very blurred and I often can’t tell one from the other.

In my early years, long before I understood what Asperger’s syndrome was, I used to think that my problems making friends were all down to my hearing loss. After all, I reasoned, If I couldn't hear people well enough to converse easily, then obviously my friend-making and friend-keeping skills would suffer.  This would have been a great theory if I hadn't lived next door to a very popular boy with a much worse hearing issue than I had.

For the first ten years of my life, that boy next door was my only friend - except of course, for my dog. When he was on holidays, and that was quite often, I would simply play by myself.  I used to be a little jealous of my friend. After all, he had lots of other friends and I was a very small part of his circle. To me though, he was my only friend, my world. 

Eventually my parents moved house and due to our mutual hearing difficulties, telephone conversations were impossible. We separated and I went quite a while without any friends at all.

School Friends
I didn't have friends at my primary school, I had parallel players. I was obsessed with Star Wars (it was 1978 after all) and I spent many lunchtimes playing with the figures with a "friend". After a while though, he wanted to play trucks instead. I didn't have trucks and I wasn't interested in trucks - my special interest was Star Wars. I never brought and trucks in and eventually we stopped playing together. I spent my last years of primary school wandering around and talking to the girls. I related better to them because they weren't interested in football or in bashing me up.

Not long afterwards, I changed schools.  I remember a boy coming up and talking to me during a soccer match. I hated sports but it was mandatory, so I'd just try to find a spot that I though the ball would never go to and then I'd stand and daydream. I probably seemed lonely to others but I was always happy with my thoughts.

Most of the time, if anyone came up to me during soccer, it was to shout at me for not doing anything. This time however, the boy just wanted to talk. At first I was afraid because after all, he was a much bigger kid than me but he didn't seem to be trying to bully me. I understood bullies really well but didn't understand friends. The next day at school he introduced me to a bunch of "nerdy" kids in other classes and told me to play handball with them at lunchtime.

Being a good kid, I did what I was asked. After a couple of years of playing with this friend and his other friends at lunchtime, our school put out a call for library monitors and I immediately signed up. After all, I loved books and I didn't really have anything else to do with my lunchtimes.  I’d been playing handball but really I’d just been letting them win all the time because that’s what I thought they wanted. It simply didn't occur to me that I was liked “as a friend”.

When these friends found out that I’d signed up to be a library monitor, they were very annoyed that I hadn't consulted them. Again, I simply didn't understand why. The very next day, they all signed up to be library monitors with me. 

Over the years, I've lost touch with a couple but mostly these guys are still my closest friends today, 26 years after leaving school. These guys are in my absolute trust zone. Of course, I've met lots of other people in the workplace, in my neighbourhood, at university and on Facebook since then and each time I've been surprised to have been asked to go to places with them. I rarely do though because I always feel so uncertain.

It's not that I don't care for these people deeply, it's just that for me, the line between friend and colleague is so unclear that I never know what I'm doing. I have no idea of what is and isn't appropriate or when someone is being nice to me because they like me - and not just for their own reasons.

Having friends when you have Asperger's syndrome is like walking around in the dark and not knowing whether the next thing you bump into is going to be hard or soft - or whether it is going to shatter into a thousand pieces.

Monday, November 4, 2013

Understanding Adult Bullying

You could be forgiven for thinking that bullying is “something that happens to kids”. After all, that’s how the media portrays it.  The theory is that if bullying happens to adults, it’s rare, it’s obvious and it’s generally the work of “rednecks” or similar people who lack the education and/or social exposure to be more accepting of others. 

In reality, bullying is as common, as pervasive and as destructive amongst adults as it is among kids. The difference is that the vast majority of adult bullying goes undetected - or at least unchallenged by most adult bystanders. We expect our children to report bullying and yet we fail to do it ourselves.

In order to really understand bullying, you have to know what it means. Google defines bullying as to; “use superior strength or influence to intimidate (someone), typically to force them to do something”.




Bullying is Intentional
I think this is a very good definition. It makes it clear that there is an intended result to bullying. It’s not accidental, nor unintentional, and for those of us who have kids with ADHD, it’s thankfully not simple impulsivity.  No. Bullying is an act with an intended outcome - even if that outcome is merely “to make a particular person cry”.

Bullying amongst kids is reasonably easy to see, after all, kids are generally transparent about the things they want, control of the playground, their favourite toy, someone’s lunch money etc.  Kids are also quite good at articulating these wants and will open directly with a request, for example, for lunch money before they move onto bullying in earnest.

Adults on the other hand are much less direct.  They know that direct methods won’t work and instead resort to less obvious ones from the outset.  Often adults have a need for control and they generally won't walk up to you and say; "I want to control your department" or "I want to control you". Instead, they'll just start bullying until your reaction makes you give them what they want.


Bullying Requires Superior Strength
Then there’s the position of superior strength. It’s no coincidence that in the playground, the bully is often the biggest kid - or the strongest, or the loudest. The measurement of superior strength in the playground in generally based upon physical aspects, though as kids, particularly girls,  move into the later school years, bullying strength relies increasingly on popularity.

In adult bullying, superior strength is often achieved by “being popular” or team-building. This is frequently seen in companies where people who have the ear of the CEO are feared by their colleagues. Sometimes bullies will do favours for others so that they can call them in if needed.  Workplace bullies like to sit in the middle of the office and will often place candies or other incentives on their desks to attract others so that they can be included in conversations and office politics.

If a victim tries to take action against a bully with friends, it’s easy for the bully to convince people to take their side.  Having high numbers of supporters makes it easy for a bully to throw out an accusation with a catchphrase like, “not bullying, just adults behaving badly”.

Sometimes bullying strength, particularly in the workplace, comes from the job description. Human resources managers are often bullies as their access to personnel files allows them to “dig dirt” on their colleagues while suppressing negative reports of their own.  This can happen in other departments too, such as IT where it becomes easy to sabotage the work of another. Unscrupulous bullies in IT departments often use their privileged access rights to snoop on the files of other employees.  It's all about power.


Aspergers and Bullying
People with asperger’s syndrome are particularly prone to bullying for two main reasons;


  • Naivety; Many people with Asperger’s syndrome are completely oblivious to indirect communication. They usually believe the lies spun by bullies and can often be manipulated into doing a bully’s dirty work for them.  It’s also very easy for bullies to bait or otherwise manipulate naive aspie victims into situations which are difficult to defend. 


  • Differences; Bullies often pick on people who are different. It’s no longer politically correct to pick on people of different races, creeds or sexuality. There are laws against that. There are also laws covering physical disability but those laws become blurred when a disability is less obvious. Since people with Asperger’s syndrome generally look the same as everyone else, it’s easy for a bully to say “I didn’t know” in their defence.


How to Help
The following quote has been attributed to many people over the years and as far as I can tell, the origin is still hazy. Nevertheless, it’s a quote which applies extremely well to bullying situations.

The only thing necessary for the triumph of evil is that good men do nothing.

If you witness adult bullying and fail to act then your actions are no less wrong than a boy who witnesses his friend being bullied at school and fails to report or intervene. We want our children to step in - so why can’t we do the right thing as adults?  Why can’t we teach by example?

Monday, October 21, 2013

Book Review: No More Victims: Protecting those with Autism from Cyber Bullying, Internet Predators and Scams by Dr Jed Baker

No More Victims
Protecting those with Autism from Cyber Bullying, Internet Predators and Scams 
by Dr Jed Baker

Coming less than a week after a terribly mishandled bullying case which destroyed my five year career in scouting, I guess I had unrealistically high expectations for this book. While it didn't measure up to my expectations, it was nevertheless a useful and practical booklet covering the subject of Internet predators and scams.  There's a mention of autism but really, it's something that can be summed up in one or two sentences.

People with autism spend a lot of time online, they are naive and are easily baited.

I really wasn't happy with the bullying section of this book. The section didn't start with a definition of bullying but described cyber-bullying thus; "Cyber Bullying is a term typically used to describe emotional victimisation and abuse among school and college aged individuals".  This is a terrible description which makes it seem that cyber-bullying stops when people leave college.  The remainder of the chapter assumes that the bully is a school student and that the school is supportive of the victim".

I can tell you from recent experience that in real life, this is certainly not the case.

The second section covers online predators and this was much better. Strangely enough, there were three pages which were copied pretty much verbatim from the previous section. They fitted into the subject material but in a book of under 100 pages, this just felt a little wasteful.

Once the book reaches the scams though, it picks up considerably and gives a great deal of good practical advice while covering the major types of scam. This section is the real gold and it stops concentrating on kids and recognises that adults with money are generally the main target of scams.  There's also a chapter by Jennifer McIlwee Myers called "an insider's view".  I was expecting this to be about Asperger's syndrome but instead it's about sites which help you to identify scams.  It's still a great chapter, it's just not about Autism - except perhaps for one or two lines.

No More Victims is a great book if you need to know about scams and predators but not so useful for bullying. Despite its title, it doesn't bring anything about Autism to the table but it is nevertheless a useful book for adults on the spectrum who are clearly more at risk due to their naivety and the number of hours they spend on the Internet.  I'm not sure that including autism on the cover is doing the book any favours though and it's equally useful to all adults who "compute" regularly.

At under 100 pages, this book is a breeze to read and it's very well laid out with clear headings, points and pictures. The appendix contains two sample "contract forms" that parents can use with their kids covering bullying and the use of phone and Internet.

If you've ever unknowingly believed and forwarded a fake message on Facebook, then this book is for you.

No More Victims: Protecting those with Autism from Cyber Bullying, Internet Predators and Scams by Dr Jed Baker is available from Future Horizons Inc. and Amazon.


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

Friday, October 11, 2013

Should your child on the Autism Spectrum attend IEP Meetings?

I was reading an article about a boy with autism who was silenced at a school board meeting because the subject was approaching dangerous legal ground.  Big thanks to Caitlin for pointing this one out.  I don't have any problems with the silencing because I fully understand the reasons and I don't think it was discriminatory.

What got my attention though was the boy's response to being silenced;

Christian concluded his talk by telling the audience that his self-advocacy work had taught him, "Nothing for me, without me," and left the microphone.

That's something for his parents to be really proud of.

I started thinking about this in more detail, thinking about how my wife and I have been going to IEP meetings without our sons and how the things we've been doing for them have been "without them".  I think there's a big flaw in our plans.

The Initial IEP Meetings
There's no doubt that the initial IEP meetings need to be conducted without the child being present simply because they're a time of deep emotional stress for the parents and teachers.  In those early days, one of the parents is often in grief and the other is most probably in denial. The teachers are guarded because they don't know how the parents are going to react and whether or not they're going to sue them or try to force a different curriculum or unrealistic expectations upon them.

Those early IEP days were a time of struggle when parents and teachers alike went through whole boxes of tissues and where voices were raised and threats were made.  It's not an environment I'd want my children exposed to.

Thankfully after the first couple of years, things settled down for us and we all realised that while we were coming from different directions with different budgets and expectations, we were actually working towards the same long term goals. Our IEP meetings today a breezy, chatting and fairly productive.


Getting the Child Involved
This brings us back to the line; "Nothing for me, without me".  It's a common cry within the autistic community. For example, there was a big outcry directed at "Autism Speaks" because they did not have a single autistic member on their board. I'm not sure if that's changed now but I have checked on the web and if they've rectified the problem, they're not being very vocal about it.

I started to think about the whole IEP process.  It's aimed at understanding where our child is struggling and finding things that will help him to achieve his educational goals. Who better than our son, to tell us what he finds challenging and what will and won't help?  Why are we ignoring him in the IEP process?

I think that perhaps, given that my eldest is thirteen, I need to sit down and discuss the situation with him. If he wants to be involved, then I think we need to make it clear to the school.  It might be time to start including him on his own advocacy.

After all, it's something that he'll be doing for the rest of his life.  He might as well learn it now.


Tuesday, October 8, 2013

Airline Travel and Kids with Special Needs

I've travelled a bit with my kids recently and each time it seems to be the same things which create the biggest problems. The flight itself is usually quite good, especially nowadays as there are so many electronic distractions. My kids took their iPads with them last time and they kept busy for the entire 10 hour flight.

No, it's the other aspects of flying which present a challenge.

Waiting
Airports are full of waiting areas. Flights always seem to do the unexpected, like get cancelled or delayed and then the waiting begins. Even before you get to the airport, there's a lot of waiting around in anticipation. It's not something that special needs kids are very good at, especially when their iPads are packed away preserving their batteries for the flight.

In my kids case, waiting means a whole lot of pushing and shoving and fighting. We have to keep them separated with at least one parent sitting in between them. It's especially during waiting in public areas that inappropriate language or gestures make their appearance.  I have a T-shirt which says "who are these kids and why are they calling me dad?" Sometimes, in waiting areas, I wish I was wearing that shirt. If nothing else, one of my regular airport waiting positions is the "facepalm" position with one finger in my good ear.

Ignoring the situation isn't the best response but regardless of how many other delaying tactics you use, eventually, you'll find yourself there too. It's just a matter of time.

Airport Security
If the waiting areas are a place where you just ignore the kids and hope that they don't cause too much mischief, then security areas are exactly the opposite. You need to talk to your kids before you get into these areas and then once you get in, you need to watch your kids like a hawk. In security, little problems can escalate very quickly and you can find yourself in some very difficult situations. Here are some of the issues I've experienced with my kids in security;

On one trip, the kids got to customs and pulled their new digital cameras out of their bags and started photographing everything, totally oblivious to the signs around them expressly forbidding photography. I wasn't aware of what they were doing until they snapped a close shot of the customs official as he was talking to me. He was very unhappy and I had to hand over both the boys cameras to get the photos deleted.

Once, I forgot to warn my youngest that his bear would be a problem. He looks a bit too old for a bear, so security obviously thought nothing of simply snatching it off him.  It was only quick intervention on my part to drag him over to the TV screen so he could watch his bear have an x-ray that prevented a meltdown. 

Just recently, I went through the metal detector without remembering my phone in my pocket. The security guys told everyone to stop but my eldest continued on through oblivious.  I had to grab him and bodily push him back before the airport security team moved in.

Then there's talking. You know how your kids come out with the worst things when you're in the company of other adults. Well, it's the same with airport security. We don't watch a lot of movies about planes at home but when we do, the planes often blow up (Die Hard 2 and other family fun movies). Of course, for a kid with asperger's syndrome, that means that the airport is the ideal place to quote those movies or talk about plot details... or bombs.   Every time my eldest started talking at security, I had to tell him to shut up.  

I probably looked like the worst parent ever but since you never know what is going to come out of his mouth, it's better to be safer than sorry.

Flying Itself
Compared to the airport, flights are easy. There's often a bit of nervousness at take-off though and I'm reminded of those movies where the other passenger skilfully distracts the anxious one during take-off. This is a skill you need to learn. In my kids case, it's probably the only time I've ever shown an interest in mine craft. Those safety videos don't do much to inspire confidence either.

Planes are full of really cool gadgets and it's very difficult to prevent your child from playing with them all during take off. Of course, most of these gadget have to be in a special position during take-off so it's worth reminding the kids before the flight gets under way.  Even then, you'll still have to watch them carefully. Have some chewable sweets available during take off and landing. This helps kids to equalise the pressure in their ears - and takes their mind off what is really going on.

Airline food is fun too. Be prepared to eat the yucky parts of your child's meal in exchange for your roll or dessert. Airline foods are sometimes spicy and nearly always contain a range of textures which seem to be "designed" to make special needs kids feel uncomfortable. You may also need to be on hand to open the foods for your child - or else you and the other passengers may end up wearing it.

Finally, there's the toilet. You'll have to talk to your kids about the toilet before they need to go because otherwise there's a chance that they'll freak out when it flushes. If you have boys, try to encourage them to sit and pee otherwise it will look like a stormtrooper has been in there. (Hint: Remember the stormtroopers in Star Wars who only had to shoot four fugitives in a straight corridor and they still missed every time).

Plane toilets are too small for you to go in to help but try to be next in line to do any cleaning up if necessary and if your child is too scared to flush, tell them that it is ok, provided that you're next in line.

Apart from all of this, flying with special needs kids can be a great experience . The key is simply to anticipate trouble before it happens.


Saturday, October 5, 2013

Article: Reducing Computer Overuse Problems in Kids with Special Needs

My latest article on Special-ism is now available; 

It's called Reducing Computer Overuse Problems in Kids with Special Needs and no, it's not all about telling your kids to get off their computers and go outside. In fact, it's about dealing with a problem which isn't going to go away.

If your kids spend a lot of time on computers, phones, iPads, androids or any other type of device requiring a lot of fine motor skill in their hands, then you ought to read this.

After you've read the article, you're going to want to know about exercises that you can do to reduce your issues. Here's some great youtube resources;


Also, if you're interested in Dragon, which is a product I've used successfully for years, here's their site. The dictate edition lets you record into a voice recorder and play it back later for conversion.  It's a good way to write documents while relaxing in a (quiet) park.





Thursday, September 26, 2013

Article: Navigating the Nightmare of Special Needs School Lunches

My latest post on Special-ism is now available.  It's all about how we changed our kids school lunches to be more "squish and forget" friendly.

If your child's school bag is always coming home with dozens of squashed and stinky mouldy sandwiches in it, then these changes could work for you too.

Click over to Special-ism to read the post.


Saturday, September 21, 2013

Child Support Essentials - Advocates


Child support essentials is a new series which looks at the essential roles in a special needs child's life, how they help the child and the ways they can hinder when applied improperly.

Advocates play a very important role in a special needs child's life. They help the child get access to support and services, they stand up for the child's rights and they promote the child's needs without damaging their self esteem.

In my opinion, the best advocates have a similar condition to the child they are supporting and they have a unique understanding of the child. I also think that the best advocates are free.

I like to think of myself as an advocate. I spend a lot of time trying to raise awareness of Asperger's syndrome and "bust the myths about it". I'm always fighting negativity and highlighting the positive aspects of Asperger's syndrome. My efforts are directed towards helping others to understand and to better accept the differences in those on the autism spectrum - and to help those on the spectrum to more easily fit in with the nuances of our society.

I don't spend a lot of time working with individual children, other than my own, to help them overcome their natural difficulties but I do help some in my capacity as a Cub Scout leader.

Most of my efforts are directed towards increasing the understanding of the adults who live and work with the children I seek to support.

Some advocates require payment and will then attend school meetings as an intermediary. We did this once and I completely regret the experience.

Bringing your own "expert" to the table to "take your side" will only increase tensions between you and the school. What better way to say, "I don't trust you" to your child's teachers than to bring someone with you to refute their every point. School meetings should be a place for peaceful cooperation and mutually beneficial advancement, not competition.

Sure, you'll probably have your "best school meeting ever" while the advocate is present as the teachers will agree to most of your proposals no matter how stupid they sound. Unfortunately, you're more than likely to discover that nothing has been implemented a few weeks down the track and the school will tell you that they tried the new methods but they simply "didn't work". You'll discover that you spent a lot of money and wasted a valuable IEP meeting just to hear the teachers pretend to agree with you for once - it's just not worth it.

Instead, use your advocates as sounding boards for ideas or resources for questions. If possible, offer the advocate as a resource for your child's teachers; someone they can ask questions of too. You'll find that the best teachers will really appreciate you providing them with an independent expert and will make use of your advocate at least once. Anything that you do to increase their knowledge of autism in a positive way will help not only your child but all others they come into contact with throughout their teaching lives.

A good advocate won't let emotions get in the way of truth and  if they're not related to the child in question can often offer unbiased advice and insight that can make a real difference in your child's education.

Friday, September 6, 2013

Interviewed on One Quarter Mama

There's an interview with me up on the One Quarter Mama blog,

Click here to read it.
http://www.onequartermama.ca/2013/09/wondrous-wednesdays-life-with-aspergers.html

While you're there, have a good look around the site because the One Quarter Mama blog is really very good. It's written by a mother with autism who has a child on the spectrum and is written in an honest and engaging way with a dash of humour for good measure.

Wednesday, September 4, 2013

When Playtime Turns Bad (Saving the Toys)

A couple of weeks ago I packed up my kids toys. It's not the end of toy playing for them but the toys are going on an extended hiatus.

It's not even the fact that in all the years they have had them, they've never cleaned them up, despite promises of rewards or threats of punishment. After all, we solved the "Lego underfoot" problems by giving the kids their own toy room which we can easily close the door on instead of cleaning.

Nope, it's because both boys have entered a destructive phase which I remember from my own childhood.

For me, it all came to a head when I visited a friend's place and we watched TV together. There was
This advertisement for "battle damaged derby cars" which sounded incredibly cool. Of course, my parents had financial issues; dad was out of work and my mother hadn't worked since I was born. There was no chance of getting the cars and even if there were, I'd be waiting about 10 months until Christmas.

The next week at school, my friend kept talking about how he was going to convert his matchbox (die cast metal) cars to be "battle-damaged" and then a day or two later he told me how great they turned out.



I knew my friend was a pathological liar because he'd often tell unbelievable stories, like how he rode his bike faster than all the traffic but somehow I didn't think to question his honesty then.

The next weekend, I took my suitcase full of precious matchbox cars into the garage, chose a couple of cars that  I didn't love quite so much and I took to them with a hammer.

I failed. They simply crushed and their wheels broke off. They didn't give the authentic "battle damaged" look I was after. I decided that it was something I had done wrong and gave it another shot with some different cars. I failed again.

I tried over and over again, with the hammer, chisels, screwdrivers and all kinds of other things thinking that if my friend did it so easily, there must be a problem with me.

Finally, only my very favourite cars remained. Everything else was destroyed. It was then that I snapped out of it and realised what I had done to my beloved toys.

I knew that I had to get rid of them but I couldn't put them in the bin or my failure would be discovered. I decided to put them all down the drain in the street.

So there it was that my parents found me crying and putting all my beloved cars down the drain. I never explained why, I simply didn't have the words to express it. I was disciplined and my parents never let me forget the incident but I didn't need disciplining. I needed understanding.

My parents told everyone around me and many people said to me that I was wasteful and that if I didn't like my cars, I could have given them to their child. They never understood that I loved those cars and that there was a psychological reason for my actions.

I held onto my last five cars until I had kids and I passed them onto my kids, who eventually broke them. I never played with them again though because just looking at them reminded me of one of the saddest days of my childhood.

This all brings me back to the present. My kids love Lego. It's the most played with and most frequently requested of all their toys.  Of course, being 10 and 13 now, they're starting to turn to other indoor pursuits like gaming and the internet.  This means that the lego is being played with less and is being picked up even less than usual.  About six months ago, I picked up all of the lego and noticed a disturbing trend. My kids had disassembled all of the lego people, lost most of the pieces and chewed many of the others. By disassembled, I mean down to the smallest pieces, detaching the arms from the shoulders and the hands from the arms so that they're no longer recognisable as "pieces of people". I reassembled the people again as best I could and told the kids not to do it again.  Adding, that if they did, I'd remove the lego for a long time.

Recently we needed to make some changes around the house to make some more room, I decided to clean up the lego and to my horror, I found three intact figures. The rest I collected into a bucket (carefully separating their pieces from the rest of the lego - a process that took nearly three weekends on my knees). One day I'll work up the stamina to reassemble them.


I've decided that my kids playtime has turned "bad" for the lego. I'll give them back in a year or so when they're older and more appreciative (and more responsible) but in the meantime, I'm doing things to protect them from themselves. I don't want them to look back and regret their mistakes like I did.

Sunday, September 1, 2013

Book Review: We Said, They Said: 50 Things Parents and Teachers of Students with Autism Want Each Other to Know by Cassie Zupke.

We've been through the IEP process many times for our kids. The IEP meetings we have now are fairly productive but both of my kids suffered for the first couple of years because we didn't have an effective working relationship with their teachers. 

As parents we had certain expectations and as teachers, they had their own agenda. My wife and I would often talk about how much easier things would be if teachers just told us their plans.  Of course, at the same time, we didn't realize just how much we were leaving unsaid.

"We Said, They Said" is a book in two parts. The first part contains 25 things that parents really wish they could say to teachers while the second is 25 things that teachers wish they could say to parents.  Reading through these, I saw myself and my wife in many of these - and I reached a much better understanding of the motivations and pressures of the teachers.

The book starts with an introduction which is essentially a seven page disclaimer. I'd strongly recommend reading it because it sets the scene and puts your mind in the right places. In this book, we leave political correctness behind for a while and spend some time looking at reality.  It's well worth it.

Of course, this also explains a little about why parents and teachers don't say these things to each other. Many of things they'd like to say could be taken the wrong way, many are politically incorrect and some things are downright illegal. Teachers have a lot of rules around their code of conduct which could land them in very hot water if they were broken.  This book gives some great examples of how teachers try to communicate this information less directly. It also gives parents a few really great pointers on the types of questions that they can and should ask to get results without putting teachers in an uncomfortable legal position.

The parenting section covers many of the hardships of raising a child with autism, the fears that parents have, their trust issues, they way they have been "burned" by professionals in the past and the challenges of acceptance and exhaustion.

On the teacher's side, the book talks about how they really feel with special needs kids in the classroom, their difficulty coping with new challenges and the various ways in which parents of special needs children make their job so much more difficult.

It's a fascinating and eye-opening experience which has helped me to understand many of the blunders I made during the IEP process.

I'd strongly recommend that all teachers and all parents of mainstreamed kids with special needs (not just autism) read this book.  It will completely change the balance of the IEP process and your relationship with the school. In fact, I can think of no better way to kick-start the school process for a new year and new teacher than to read this book and then give a copy to your child's teacher to read before your meeting.

We Said, They Said: 50 Things Parents and Teachers of Students with Autism Want Each Other to Know by Cassie Zupke is an enlightening and breezy read with excellent formatting.  It's available in paperback from Future Horizons and from Amazon.


Honesty disclaimer; I was provided with a review copy of this book.

Monday, August 26, 2013

Responding to Hooey about Autism

I've been reading the (so far excellent) book; "We said, they said: 50 things parents and teachers of students with autism want each other to know" by Cassie Zupke.  A review is coming soon.  In the meantime, Chapter 5, entitled Hooey talks about the the confusing amount of contradictory and money-grabbing autism theory out there.  

I thought it was probably worth my while stating my motivation and my point of view.

Hooey is not a word we use in Australia.  I'm presuming it's an American word for bullsh1t.  That's how we say it in Australia. We tell it like it is.

Motivation
My motivation on this blog has always been to raise public awareness of Asperger's syndrome and to provide a more balanced and positive place for parents and people with Asperger's syndrome to learn about themselves and their children.  I don't claim to know everything but I do claim to have lived daily with Asperger's syndrome (if not the knowledge that I had it) for over 40 years. That's more than most doctors and childcare professionals can say.

I don't have any hidden agenda and I'm not (at this stage anyway) planning to write a book or otherwise make money from the blog.  You'll note that there is no advertising here - apart from book reviews which are honest and for which I receive no payment, apart from a review copy of the books.

I just want to see some acceptance and to make the world a better place for those with autism.


On the Cure for Autism.
There's no cure. There's arguably only "spotty" detection too.  If anyone says that they have a cure for autism, they're lying.  In fact, personally, I don't believe that it will ever be cured - at least, not in my lifetime. I'm also not sure that a cure would be such a good idea.

I do know however that some therapies can help children to better cope with their difficulties but there's nothing in the world that makes autism "go away".  Even if a miracle cure were to be announced tomorrow, there would be many years of testing before it would allowed to be used on humans.  In fact, it's a safe bet that if they found a cure, no child of that generation would benefit.

As for me, I think the whole thing is both genetic and natural. I believe that autism has a place in our world, that it's one of those "curve balls" that natural evolution throws us from time to time.  I think it's necessary for us to survive and grow because autism has, in some way, been associated with nearly every major breakthrough in human history.

I think that Temple Grandin was right when she said, "Without autism traits we might still be living in caves.”

So even if there were a cure, I'd argue that it might spell the end of human creativity.

Saturday, August 24, 2013

Article: Kids with Isms can benefit from using Lists by Gavin Bollard

My  Latest Post over at Special-ism is now up;

It's called; "Kids with Isms can benefit from using Lists"

Please have a look at it.

It's all about how lists are one of the best tools for children (and adults) with Asperger's Syndrome and Autism and other similar conditions can really benefit from using lists as management tools.  If you're the parent of a very young child on the spectrum, this is still worth a read because I describe some pre-verbal lists which you may find your child is already using.

Monday, August 19, 2013

School Supports: Taking a Realistic view of the School System and the Support it Needs

We all want to send our kids to school and have them return as bright and educated young adults. Unfortunately the "playing field" is far from level and many of our kids simply struggle too much with everyday tasks to become academic superstars. Sometimes we just have to revise our goals and accept that we, our children and the school have done the best that we can do.

Too often I find that parents are confused by school. They believe that the purpose of school is nothing more than to return our kids to society with an academic education.  They consider that what their kids  are learning at school isn't useful if it isn't focussed on the their child's primary issues.

The reality it somewhat different.  In this post, I want to touch on some of the supports in and around school systems and see how they combine to help children with special needs. Hopefully by the end of this post, you'll understand that school is only a small part of your child's educational process and that those numbers on the report cards really aren't much good as a measure of success.

Individualised Education Plans (IEPs)
If your child has documented special needs which entitle them to an IEP, then make sure that you get one. IEPs are a essentially a  goal orientated plan for your child's learning in the school. They deal with real measurable output and they are designed to help your child achieve some specific goals with appropriate support. The IEP meeting shouldn't occur in the first few weeks of the school year (or in the last ten). In order for it to succeed, the plan should be written after the teacher has gotten to know your child but before it is too late in the year to make a difference.

IEPs should be reviewed and rewritten every year because goals, skills and problem areas change.  When the IEP is reviewed, you should ask whether or not your child reached their goal and what types of support helped or hindered.

Teacher's Aides
It's always a time of "false joy" when your child is allocated an aide. Most parents are excited by the prospect of a one-on-one helper teacher in the classroom for their child but this is usually not how it works. They're not called "Special needs child's aides", they're called Teacher's aides. They support the teacher, not your child.  The aim of a teacher's aide is to "take the heat off the teacher" so that the teacher can spend more time with the students who need support.

It's still good because it means that the teacher will be spending more time with your child but it certainly doesn't mean that your child will get one-to-one attention while the aide is there. The aide supports the classroom and some days, your child won't get any benefit from them at all.

What Schools Teach
You might be surprised to learn that schools don't teach everything. In the academic world, schools teach primarily by example. Mathematics is taught by having the teacher do examples on the board but it's not something that the students will pick up without lots of practice (and in particular, homework). Then there's English; I can remember going to a good school only to have to sit in English class while the students took it in turns to read chapters of Jane Austen's Emma out loud. I'd already read the book before starting the year and in fact, I'd read it once or twice more once we started working on it.  The readings were purely to help the kids who hadn't read it. Personally, I'd rather they spent the time to teach us how to write a good essay but they didn't.  Instead, we wrote the essays and were taught by our marks. A low mark meant that you were "doing it wrong" while a high mark indicated that you were "doing it right".  Sadly, that's still the way that schools operate today.

Schools are not academic powerhouses. They teach a little of the basics at usually, the lowest common denominator. They teach a little math, a little English and a smattering of other subjects including History, Art, Science, Religion, Phsyical Education and more. The aim is to raise awareness of the subjects and help the students find their interests, not to make them subject experts.

Tutors
The best one-to-one academic resource for children is a tutor. A tutor can spend time looking at your child's specific needs and adjust their teaching accordingly.  One hour per week with a good tutor is generally more effective (academically) than an entire school week with a classroom teacher. If your child is struggling, then a tutor is the best resource you can have.  A special needs tutor is even better.

Tutors don't replace the school, they supplement it. 

Outside Organisations
The other part of schooling is social development. In school, this typically happens as part of Playground activity, Sport, Drama or Music and to a lesser extent Art. The problem with school-based social development is that it plays a poor second to general school work.  Children with poor social skills often don't realise that this time is supposed to be spent socialising and with the abundance of other kids around, their potential "mates" will easily find someone else to talk to.

The best social development occurs with different groups of friends and in different circumstances such as outside sporting groups, special interest groups, like little athletics, scouts and even chess and drama clubs. One of the best things about these clubs is that they're limited in numbers. This means that the kids have to make friends because there's not a whole lot of choice elsewhere.  The right sort of group can also engage the special needs child in terms of subject matter and help them to grow in confidence.

Therapy
Special needs kids also need a lot of therapy to help them along.  There are lots of different types of therapy but the most common two are Speech and Occupational. Speech therapy isn't just something that you need when you stutter or have problems with words. Speech therapy promotes a lot of social skills too and teaches children how to approach others in conversation and how to use more emotive language. If for example, your child often speaks in a monotone, then speech therapy can help.  Occupational therapy provides support for a wide range of behaviours including support for fidgety kids, assisting with pencil grips, modifying classroom equipment and putting in place other kinds of supports.

Sometimes these therapies in themselves become an almost psychological outlet for kids. That's not a bad thing though. It means that your kids have an adult that they can trust and with whom they can talk about school and playground social experiences. If the therapist is attached to the school, they can often intervene in problems before they get worse or can provide useful information to your child on how they should handle specific situations.

Family
Arguably the largest piece of any child's education is family. It's from family, particularly parents that children learn most of their social behaviour.  It's parents who teach by example, that books can be a welcome alternative to computers and TV or that sometimes it's good to just get outside and play.  Finally, it's family who follow through on things in the school system, such as attending IEP meetings, showing interest in their child's work and prompting and assisting with homework.

Together these, and a few other things, help to give your child a well-rounded education.  The problem is; only one of these, schools, actually gives grades. The message here is simply; "don't put too much stock in the grades assigned by only one of the components of your child's education".  

Monday, June 24, 2013

Embellishing Stories

When I was little, I was always fighting for a little attention. My parents used to tell me to "shut up" constantly but I never understood why.  I didn't understand then why my obsessive discussions about Star Wars and Doctor Who were so annoying to them.  They didn't want to know about the propulsion systems or torpedo systems used in Luke's x-wing fighter or about how the TARDIS's dimensional transcendentalism was achieved. Nope, they just wanted to hear the boring "real-life" stories.

I on the other hand didn't want to discuss my "real-life" stories, especially since I used to spend all day dreaming my way out of them.  I didn't want to talk about how I played with nobody or how I took a ball to school and the other kids played with it but excluded me. My fantasy worlds were what kept me going.

I soon learned that the best way to be listened to was to talk about real things but make them exciting.  To talk about the endings I wanted rather than the reality of life.  It was a poor substitute for fantasy but it got me listened to and made me feel important in the eyes of my parents.

Of course, I went too far in those early days and I can remember trying to convince my mother that a haunted house (which I got too scared/lost in and had to return out the entrance) was full of huge obstacles.  I think I lost her when I mentioned the pool of sharks.

I also found it difficult to talk about other people.  I'd be at school and I'd see something interesting which I'd want to talk about.  Those early days were all about "who was it?", "oh, is he a friend?", "do you play with him at lunchtime?" and a thousand other unrelated questions. I wanted to talk about whatever fascinated me, not spend ages explaining who someone was and then answering "twenty-questions".

I soon learned to claim incidents as my own. To talk about things from the first person and to not mention other people. To me, these weren't lies, they were just suppressing things that I didn't want to discuss.  Of course, my parents considered me a liar.

I got better though, much much better and after a while I was able to not only talk about things that happened as if they'd happened to me but also to "reprogram" myself to remember them that way.  I became so convincing that I convinced myself.

Things came to a head one day at school when my parents and other teachers started acting on things that I said. Those embellished stories were having an effect in the real world and hurting people around me. I had talked to my parents about a "crazy" teacher and related some things in the first person. He got into a lot of trouble and eventually left the school**.  I didn't mean for anything bad to happen but it did simply because people were listening to me and I resolved never to lie again.

It's hard to know exactly how much of this was Asperger's syndrome and how much was just me being myself. Certainly the clarity of memory and the ability to adjust memory seems  to be an "aspie" trait. The struggle to be listened to is also a common thing amongst kids with Asperger's syndrome. I know that my own eyes glaze over and I don't give my own kids proper attention when they start talking about minecraft.

Sometimes I think we parents need to accept what we can from our kids - even if it's "garbage fantasy talk" but it's much easier said than done.

** BTW: As an adult now, I don't have any feelings of guilt over what happened to that particular teacher. He was really a bad person who did massive damage to other kids and he deserved to lose his job.  It's just a shame that he didn't lose it because of the kids he was hurting. I know their lives improved drastically once he was removed from the picture.

Tuesday, May 28, 2013



My latest post is now available on Special-ism.  It's all about labels and why we need to advocate against them.

Please hop over and have a read.

Why we need to Advocate Against our Children's Labels
http://special-ism.com/why-we-need-to-advocate-against-our-childrens-labels/
by Gavin Bollard
at Special-ism.

Monday, May 13, 2013

Guest Post: Autism Spectrum Siblings Need Love and Guidance Too! by Trish Thorpe

The following is a guest post from Trish Thorpe, Author of "Fisheye: A Memoir" and "Asperger's Sibling Support: 15 Practical Tips for Parents/Caregivers".  Please take a moment to check out Trish's books.


Autism Spectrum Siblings Need Love and Guidance Too!
I'm 53 and the younger sister of an older brother (by two years) who had undiagnosed Asperger's while we were growing up (1960s and 1970s). My brother and I grew up with very unaware, self-involved parents. Short story...I spent years in therapy sorting through our family dynamics and learned so much about the kind of parental support needed to raise special needs kids and neurotypical siblings in a balanced home. 


Here are some pictures of my brother and me when we were young:


I'd like to share what I learned. I collaborated with my therapist and wrote a series of tips that will hopefully help parents and caregivers understand and support ASD siblings. My goal is to raise awareness of the need for Autism Spectrum Disorder (ASD) sibling support (the often-overlooked piece of the ASD support puzzle).

Don’t Be a Superhero
If you’re constantly fielding complaints about the way you’re handling your Asperger’s child’s behavior, make it clear that you don’t have all the answers. Explain that Asperger’s is a fairly new diagnosis and that you and the professional psychology community are trying your very hardest to do the right thing. Point out that you’re keeping up with all the latest information about Asperger’s behavior. (It’s good for your child to see you adapting to change.) 

By admitting this, you’ll be offering a more realistic view of yourself as someone who is coping and learning on a day-to-day basis. You’ll also be conveying that you are not a superhero whose achievements are unattainable for the average person. This will hopefully open the door for your Asperger’s sibling to feel like they can make a positive contribution.

Justify Household Rules
You probably find yourself constantly explaining why the rules and expectations are different for different members of your household. For example, maybe your Asperger’s child gets to spend extra time on the computer and/or less time doing homework. Explain to your Asperger’s sibling why it’s happening. Explain that their brother/sister does homework with a special teacher at school and therefore doesn’t have as much to do at home. 

This will hopefully dispel any claims of unfair treatment. If not, continue explaining that extra time on the computer might help their brother/sister develop skills needed to live as independently as possible, which could benefit the whole family. If you explain it as being an advantage for the entire family, that may allay any claims of favoritism. It will also help your Asperger’s sibling feel like you’re entrusting them with special information.

Show Compassion
Create an environment of compassion for differences in others. Try to model a positive perspective by always pointing out the constructive traits of having Asperger’s Syndrome (enthusiastic, conscientious, free of prejudice, honest) instead of dwelling on the negative. Here’s a link to fifty positive Asperger’s traits

Children mimic their parents. The way that you view and project the attributes of your Asperger’s child can be an example of strength and resiliency for your family members. They will follow your lead. 

Remember that your Asperger’s sibling will have to deal with many different people, personalities, and temperaments as they navigate their way through life. Learning compassion from your love and guidance will benefit them greatly.

Create Personal Space
Your Asperger’s sibling needs to feel entitled to their own belongings and their own private place in the world. This will hopefully reinforce the notion that they are a complete person separate from their role as an Asperger’s sibling.

Find a spot in your home that they can call their own. It doesn’t have to be big. It can even be as simple as a shelf or a drawer. Just something that is solely theirs. Make sure that both siblings understand the boundaries.
Explain That It's Nobody's Fault

Watch for hints that your Asperger’s sibling is blaming themselves for their sibling’s Asperger’s. If you suspect there is any doubt in their mind about the cause of Asperger’s, reiterate that it’s simply something people are born with and that it’s nobody’s fault. You can say this as a general statement; it doesn’t have to be in reaction to something else. Just say it out loud, more than once, and it will sink in eventually.

I hope these tips are helpful. There are more. They come from the heart. Would love feedback about whether or not they make sense for everyone. 

Trish Thorpe, “Asperger's Sibling Support: 15 Practical Tips for Parents/Caregivers” is available from Amazon.