Life with Aspergers

Last week, I read a post from a lady who didn't feel accepted by her partner. The interesting thing was that while she knew what she wanted to say, she felt that she couldn't talk to him about her autism.  She was considering the next steps in her relationship but was going into it without the tools to communicate effectively.  Until quite recently, people with autism tended to fall into two broad categories;  Those who were diagnosed with autism because they exhibited behaviours to such an extent that they were unable to get into long term relationships, and Those who went undiagnosed into a relationship.  These days however, it's much more common for people entering a relationship to know that they're on the autism spectrum. In this post, I want to look at the benefits of disclosing autism to prospective partners. Why is it becoming more common? A couple of decades ago, it was relatively uncommon for people to get married with the knowledge that...

A couple of weeks ago, I officially hit the big 50. I guess that makes me an "older adult" now. Nothing much has changed but I thought it would be worthwhile looking back over 15 years of diagnosis and talking about what it's like as an older adult on the spectrum.  The Words I still tend to use the word Asperger's to describe myself. It's not because autism is necessarily a bad word, it's more that this was what I was diagnosed with. Obviously I haven't gone back to the doctor to seek a wording update. There's really no point as I already know what it would be. When I'm writing, I'm increasingly trying to use "autism" but that's mainly to help me connect with my audience. If I talk to an older person, I use Asperger's and if I talk to a younger person, I use autism. In terms of "whichever first" language (person with autism vs autistic person) is mostly irrelevant to me. I'm actually a "Person with...

If you're the parent of a young adult with Asperger's syndrome you'll be very familiar with the need to keep educating and pushing your child. You'll probably be an expert at it and you'll most certainly be very tired of all the work involved.  The question is; should you continue to push your young adults past their twenties or should you back off and allow them to find their own way forward? We Never Stop Pushing  Regardless of whether or not we should give our kids more space, one thing is clear.  As parents, we never stop caring for our children and their future. We simply can't help ourselves - and that's okay. It's okay that we're always concerned for their welfare and that we want what's best for them but there are big differences between trying to help and trying to control.  We need to make sure that we stay on the right side of the line. The Impetus to Move One of the biggest areas of contention between parents and young...

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...

For many people with autism, getting a job is a pretty difficult prospect in itself but once they have one, the difficulties shift towards keeping the job. Keeping a job when you are on the autism spectrum seems to be a matter of maintaining the delicate balance between being largely invisible and not being too quiet. Hiding in Plain Sight  For many people, the word “autism” conjures up bad images. At one end of the spectrum, people assume that they are hiring a person who will need babysitting rather than someone who will perform their allotted tasks independently. At the other end of the spectrum, people think of the high school shootings or computer hackers and sense danger in employees on the spectrum.  Of course, we've just had “autism acceptance month”, so everyone is fine with it all now right? Wrong. What people say and what they do are very separate things. If it was that easy to conquer fear and discrimination, there would be no reason to discuss racial iss...

I'm often asked, since I moderate comments on this blog (require approval before posting), why I allow comments which are harmful but block some comments which fight back. Surely here, of all places, I should be standing up for people, like myself who are on the autism spectrum? It's a good question and it’s one that I still struggle with constantly but I thought it would be worth posting about because it says a lot about me, about my intentions and how far I will go to ensure that the messages are understood. What does Get Blocked…. First of all, one of my aims in comments is “protection”, so any comments which mention email addresses, surface mail addresses or phone numbers (of individuals) will automatically get blocked. It's simply too dangerous to post these things. I've had people on the spectrum leave comments about loneliness and their hope that someone nearby will connect with them - and then they leave personal contact details. This is downright dangero...

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...

One of the most common issues in the world of autism is the perception of Autism itself as a problem - or even worse, as the personification of a problem. It's fairly common in the early days of diagnosis when parents simply aren't handling the changes to their expectations but if it persists for more than a year then it becomes a problem which can end up doing a lot of harm. Objectifying autism takes the focus off the child and puts it on the condition instead. Parents, groups and companies in this mode spend their time thinking about how to cure and prevent the condition rather than on how best to help their children. The focus then becomes extremely negative and it is only a small step from discussion of murdering an imperfect fetus to the murder of a child under your care. This outlook doesn't help anyone. It's not about "Saving the World", it's the smaller, personal stuff that matters Being the parent of a child on the Autism spectrum is...

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) fo...

"Ten Things Every Child with Autism Wishes You Knew" by Ellen Notbohm; Updated and Expanded Edition 2012 Published by Future Horizons This is quite an unusual book. It's not a practical guide to handling day to day issues with Autism, nor is it a dry clinical description of Autism.  It's essentially a book promoting a new paradigm, (a whole new outlook) on Autism. It provides you with an understanding of some key positive concepts and then goes on to show how they can be put into practical use on a daily basis. I feel that this book could be better described with the considerably less catchy title of;  Ten concepts which your future happy and successful grown up child with autism needs you to know, understand, believe and "live" now - in order to ensure that the time line works out for the best. Make no mistake, these aren't ten baby concepts which will only hold true for a small part of your child's life.  They're adult ones, mantras...

Recently I was looking at Music Videos on YouTube when I found some videos by Adele, a singer whom I only recently discovered sings several songs that I like.  I watched the video and happened to glance through the comments. There were a couple of positive and negative ones, after all, not everyone likes the same music.  Then I found the unacceptable; "she's fat", followed by a few cries of dissent then a whole lot more "trolls" repeating the mantra. It's reading comments like this which really makes me despair for the future of the human race.  We think that we're so far evolved from the haters of the 1940s but in truth we're not. We're every bit as judgemental and unaccepting as those we strive to distance ourselves from. It didn't help that shortly afterwards, there was some kind of US political debate about an overweight politician and then our local radio station here in Sydney, Australia started having a discussion about why ...

I don't often talk about specific issues with my kids on this blog preferring instead to tackle general topics which could benefit everyone. (and of course, I try to protect their privacy a little). I'm going to make an exception in this case because it illustrates perfectly some of the issues and decisions which parents of special needs children face all the time. My eldest son, aged almost 12, is in year six, his final year of primary school. He's been in "special needs" since kindergarten seven years ago and on ritalin almost as long. Over the years we've had our share of school issues, both social and academic and it takes each new teacher nearly an entire year to understand him. It was always our hope that one day, when he was old enough to "self-regulate", we could ditch the ritalin and I think that we all expected him to be off it by now. There have been many times over the years when we've forgotten the ritalin (or run out). ...