Life with Aspergers

I've been taking a break from blogging for a while because it seemed to me that the world had bigger problems than autism and Asperger's syndrome. I figured that eventually things would go back to normal but now it seems they never will. Too much has changed.  One of the key moments was the loss of one of my good friends, a fellow blogger with autism who I met a couple of decades ago when we all used to call it Asperger's. We never met in person, though we once got within 100 miles of each other before illness intervened.  Her passing hit me hard, but it's odd. It didn't hit so much immediately, but it's certainly been hitting me over the past few weeks.  I'll try to explain that.  Kate. from her facebook pictures, June 2014 (with a few colour tweaks) Losing People I think that initially it's much easier to lose someone online than it is to lose someone you see every day in "real life". It's because with people who are online, we're use...

What your Child on the Spectrum Really Needs: Advice from 12 Autistic Adults. For Autistic People Everywhere. May Your Voices Be Heard by Jenna Gensic This is a book review that I really should have done about eight months ago. I wanted to be able to do this book justice but it's just so diverse and informative that I don't think that any review I write will really describe the breadth of it. The book is only 115 pages long but it's A4 sized and absolutely packed with information.  Jenna Gensic is a freelance writer who blogs over at Learning from Autistics  and she frequently publishes interviews with autistic people. As I write this, she's just published Interview 147. It's an incredible achievement.  At the beginning of the book, Jenna talks about her experience learning from the narrow experience and perception doctors and her discovery of the world of advocacy. I've often said that while doctors have medical training, they see an average of around 35 patien...

It's a phrase which seems to really infuriate a lot of members of the autism community, "we're all a little bit autistic" and yet, there's perhaps some truth to it.  In this post, we look at what it really means, where the dividing lines are and why it can be considered offensive.  The Autism Diagnosis Autism is diagnosed based on a specific set of criteria from the DSM, currently version 5. You can read this criteria in its correct form all over the web and you really should follow this. In fact, you should be diagnosed by an expert. In a "nutshell" though, autism is defined by the following; A Communications issues; Reductions in; back & forth conversation, eye contact, emotional communication, non-verbal communication, understanding of relationships, capability to make friends. B Behavioural issues; Stimming movements, echolia, resistance to change, fixed all-consuming special interests, sensory issues. C Removing Misdiagnosis To...

As we wind down April, the month of "light it up blue", "autism awareness" and "autism acceptance", I wanted to ponder the other side of the equation. At the beginning of the month, I talked about how those of us on the spectrum needed to represent ourselves . Now I want to look at what we really need from people who aren't on the spectrum.  As usual, the best way to answer that question is to pick a group which already has good accommodations and look at how this could apply to autism. Beyond Acceptance, the example of the blind.  My comparison point this time is blind people. I'm not suggesting that nothing more can be done for them but rather that their needs are understood and catered for well beyond simple "acceptance". Our social care of visually impaired people is impressive and something that other groups should strive to match. So, how are the visually impaired being looked after by society? Braille: It's not jus...

Over the years, April has been associated with the "Light it up Blue" campaign launched by the group "Autism Speaks". The campaign originally advocated awareness and then acceptance.   It's something that I've posted about more than once before on this blog.   Autism Politics: Puzzle Pieces and Rainbows  - March 2012 How to do More for Families with Autism than just being "Aware" of it - April 2014 Doing Better than Light it up Blue - April 2017 In recent years, the campaign has changed from something that people with autism were wary of to a cause that is actually opposed by the majority of them. Autism Doesn't "Speak" There are many reasons for this shift but in my opinion, the fact that "autism speaks" is entirely controlled by people without autism is probably the major factor. It's not that they've never had people with autism on their board; they've had some famous people including John El...

Meet ME Where I'm At  by Cindy Best and Joyce Shor Johnson Published by Future Horizons Meet me where I'm at is a very unusual book. It's half picture book and half workbook and I don't mean, the first few pages are one and the rest are the other.  This book seamlessly blends both at the same time. The general idea of this book is to get children with special needs to let others around them know exactly "where they are at". Instead of expecting children with special needs to stretch to meet their parents, teachers and friends on levels where they can't function well, this book aims to encourage them to advocate for themselves and ask others to meet them at their own level. It's a very interesting concept which I've seen in adult work before. This is the first time I've seen this agenda come though in a book aimed at kids - and it's a very welcome move. The main pages in "Meet Me Where I'm At" follow a stand...

This is a re-post of an article from September 2010 for "SOS Research Blog" which was on a site which no longer exists. The SOS project eventually became Special-Ism  which is a site maintained by a group of bloggers to provide insights into support for children with special needs. This post has been lightly edited from the original content. You can also download a free eBook (Volume 1 of my collected posts), from Google Books or directly in ePub , PDF or mobi Formats.  - Gavin Bollard January 2015. This post is part of the series titled “When One Door Closes, Another Door Opens,” where people reveal how their paths have changed since a child with special needs has entered their lives. ~Danette Schott (SOS Research Blog) We all have closed doors. I grew up being told by supportive grandparents that I’d be something special someday. They bandied around with ridiculous job titles such as “Prime Minister” even though I've never shown any interest in politics. G...

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...

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...

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 ...

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.

Today is April 2nd. It's the international "Autism Awareness Day". People are encouraged to wear blue to show their support of this "awareness" and many bloggers will post every single day throughout the month to raise "awareness". I'm not one of those bloggers. My posts will come out as and when I have relevant and useful material to contribute.   It's rare that I interrupt a series of  posts for a specific event but I thought I should talk about the whole Autism Awareness thing. I'm all for the world understanding and accepting and loving people with autism - in fact, I'd extend the whole courtesy to people without autism too. To cats, dogs, mice, lizards and plants.  I suppose that it's a nice gesture but to me, the whole blue thing is as irritating as those "baby on board" signs. You know the signs on cars that make you wonder what you're supposed to do?  Cooo as you go past? Offer milk? ...

In general, I feel that I'm more "easy-going" than many of my colleagues on the spectrum in that the language of autism generally doesn't faze me. There is however one phrase which really "gets my goat". It's "the epidemic of autism". There is so much fear, inaccuracy and segregation hidden in this phrase that it passes through all of my barriers and actually manages to offend me. First of all, there's the negativity associated with comparing autism with a plague. An association which brings to mind words like; avoidance, quarantine, cure and eradication. Then there's the concept of rapid and uncontrolled spread, suggesting that autism is a new "disease" which has only recently appeared and is "spreading like wildfire". All of these concepts do damage to the work of autism advocacy and to the support networks of children and adults with Autism Spectrum Disorders. They build on the concept of fear and target ...