Life with Aspergers

As I prepare to close the door on 2024, which was another blog-lite year for me (I only did three). I wanted to talk about where I am at and about why Autism is still highly topical in 2024.  Image Generated by Google Gemini Where I am I'm still married to the same person (just passed 27 years), still working and still living in the same place (24 and 28 years respectively). My kids have grown up and are now trending towards their mid-twenties. I've tried to talk about them less to give them more space to grow up into individuals who can go through life without having people look them up online and learn everything about them.  For all our "advances" and "woke-ism", the world is a much more dangerous and intolerant place than it was in 2007 when I started this blog. Words like "Asperger's" are now considered triggers and instead of providing protection, social media companies have created platforms that encourage and support bullying, spam and ...

Please note: Under the DSM V, the concept of Asperger’s syndrome no longer exists. It is now simply referred to as Autism. Throughout this post, I use the word "Asperger's" because it's more frequently associated with the word "mild" but my comments here apply equally to both Asperger’s syndrome and autism.  You see it all the time on web forums,  things are going smoothly until a parent somewhere pipes up with the phrase, "I have a son who is mildly Asperger's. ..." and from there on, the group dissolves into two factions. One is continuing to remain loyal to the original purpose of the group, providing support and advice while the other is offended and is either busily discussing the semantics of the word "mildly" or tearing strips off the poor person who used the turn of phrase. It's also a turn of phrase that some people on the spectrum use to refer to themselves although this is much less  common.  What is "mild Asp...

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.

In the last few posts, I've looked at the two sides of the controversy over the changes to DSM V regarding the absorbtion of the Aspergers label into the general autism banner. In this post, I want to give you my thoughts and position on the issue. Label Recognition Aspergers is quite obviously on the Autism spectrum. There's absolutely no doubt in my mind that they (aspergers and autism) share many traits and that often, though not always , the intervention required is also the same. At the same time, I'm confused by all of the sub-labels in the autism spectrum. Like Aspergers, High Functioning Autism (HFA) is a successful "brand" bringing almost instant recognition but who amongst the general public knows how to refer to the other end of the spectrum? Label Reliability What exactly does "high functioning" mean anyway? I have met a range of people with this label and they ranged from "rain-man style" savants to people who could barely speak. ...

Last time I looked at and played "devil's advocate" to, the argument to absorb the Aspergers label into the wider Autism label. In this post, I want to look at the case "against". The Autism label is Tainted This is by far the most "vocal" argument against the merge. There's certainly an element of truth to it. I don't think that anyone who really knows autism will try to suggest that the word isn't tainted. Stop anyone on the street and ask them what "autism" is. You'll get instant recognition. They'll tell you about children who can't function without adult helpers and if adults are mentioned at all, they'll tend to be the "diapered" and "institutionalised" variety. Usually, people on the street don't even think about autistic adults. It's like the "problem" simply goes away. If you try to suggest that there are adults on the spectrum who don't live in institutions, y...

Following on from Part one, which admittedly didn't actually tell you anything about the issue (just provided background), this post will look at some of the arguments for merging the labels. I'll look at "against" in the post after this. First, I want to clear up a couple of things. Aspergers *IS* Autism Aspergers has always been an autism spectrum disorder (ASD). In fact, for a few years, it was popular to refer to it as "Aspergers Autism". I'm making this point because in reading some of the "negative" posts around the internet, it's become obvious that some people think they're entirely separate conditions. There have always been people with Aspergers who want to distance themselves from Autism. I can remember struggling with acceptance of the word "Autism" when my son and I first got the label. The reason is simple; we've all be tainted by Hollywood's take on Autism or by our own experiences with severely aut...

Like it or not, Aspergers is a label. Everything has labels, it's how we communicate in our world. Of course, the problem is that people find it difficult to reconcile the label with the individual. At first, it seems that they should mutually exclusive. After all, how can you be part of a group with similar characteristics (label) but still be an individual. In this post, I want to talk about how the label and the individual can live in harmony. Tables and Chairs Since Aspergers and Autism are difficult and intangible concepts let's look at a real world example; Assume that the label of autism is the same as "furniture". If that's the case, then Aspergers could be a table, while Kanners could be a chair. Perhaps something more similar to aspergers, such as High Functioning Autism could be a bench. It's not quite a table but it's certainly closer to a table than to a chair. Defining the Label It's very hard to make a list of what exactly defines a ...

The main crisis of faith I had when diagnosed with aspergers related to my own sense of individuality. Sure, I was happy to be part of a group of like-minded individuals but I was concerened that many of my "unique traits" were no longer unique. I'd accepted myself as someone who wasn't good a things like social, sports and general "blokey" things on the basis that I was unique. I was an individual who could be at times funny, weird, intellectual and astonishing but now I'd found a group of people who were bad at the same sorts of things as I but who excelled in the same quirkyness as me. It had stopped being "me" and became a question of genetics. I no longer felt special. Differences amongst Aspies I've taken comfort over the years since then in the fact that we are in fact, not all alike. We each have our own sets of traits and we each have our own personalities. It has taken a long time for me to re-accept myself and to see those ...

There's no question about it, the majority of Asperger's diagnosis' handed out today go to children. It is also pretty clear that the diagnosis provides access to a lot of ongoing early intervention and is the most successful way of dealing with the problems condition poses. Some time ago I asked whether or not it made sense to label our children. Although the answers were far from unanimous, the majority seemed to support the label. This was because in most cases, a diagnosis provided obvious benefits. It's a fairly simple question when aimed at children but it becomes a very different question when aimed at adults. It's difficult to tell whether or not a diagnosis can be useful for an adult who has already become well-established in the world, though not necessarily successful. A Lack of Obvious Benefits For a start, the obvious benefits just aren't there. There generally aren't any government handouts for adults with aspergers and revealing your condi...

A Quick Recap   Thus far, we've looked at the effects of an Asperger's (or autism) diagnosis on parents (of younger children) and on the Aspies themselves . In this post I want to look at how other family members, colleagues, teachers and friends react.  Siblings   At young ages, there is little reaction from siblings towards the diagnosis and its effects. Any young sibling reaction tends to be directed towards the perceived "differences", not the label.  This begins to change as the affected child grows older and gets more "special treatment". Its common for mothers to "baby" their aspergers children and this can cause resentment with siblings.  If a diagnosis is revealed to a sibling at adulthood, the result is often denial and dismissal. This is similar, though often stronger than the similar reactions expressed by parents when their adult children receive a label.  Older siblings often consider the label an attempt to "get more attent...

In part one of this series, we looked at how parents react when their children are labelled. In part two, we look at how the person being labelled reacts and discuss the best times for disclosure.  The Age Differential Most people with Aspergers seem to be "born with a knowledge of their difference", though in truth this awareness develops over time, mostly during their primary school years. The age at which the label of Asperger's or autism is used to describe these differences seems to have significant impact upon the way in which they are received by the person with the label. Of course, there are other factors too, particularly the way in which others receive the news. The Very Young As you would expect, telling an "under 8" year old child that they have Asperger's Syndrome or autism is pretty similar to telling them that they are wearing a blue cardigan or that they were born in Australia. Their reaction is pretty minimal. Of course, the fact that...

Introduction The aim of this series is to look at how various groups of people react to label disclosure. There's always a lot of information on the criteria and the tests but there's not a terrible lot of material on the reactions once a label is assigned.  I plan to cover, the reactions of parents, those being diagnosed and others around them. Parental Reactions Parents often have very extreme reactions to their child's diagnosis. Depending upon the parents, their reactions could be opposite. Indeed, when my son was first diagnosed, my wife and I experienced the "opposites" reaction described under "relief". The Quiz and Denial One of the biggest problems with autism spectrum disorders is that there is no "litmus paper" test. On the face of it, Asperger's and autism often gets diagnosed with a quiz and a bit of observation. This makes it very easy for parents to deny the condition. After all, it's like someone doing an "...

Hot on the heels of my recent articles comes Dave Angel's take on the subject; When should I tell my son about his diagnosis of Aspergers? by Dave Angel http://parentingaspergers.com/blog/when-should-i-tell-my-son-about-his-diagnosis-of-aspergers/ I get the feeling that Dave supports the idea of telling children in an age-appropriate manner. He also cautions against the self-image issues which can arise from allowing a child to think that they are "defective". It's critical that if and when you do tell your child, that you make the experience a positive one.

It's a well known fact that the percentage of introverted personality types amongst Aspergers people is considerably higher than the percentage amongst the neurotypical community but this often leads to the belief that all aspies are, by definition, introverted. Measuring Introversion There's an online test based on Carl Jung and Isabel Myers-Briggs typological approach to personality which you can try at; http://www.humanmetrics.com/cgi-win/JTypes1.htm My Scores Just for the record, my scores on this test were; INFJ Introverted 33% Intuitive 25% Feeling 38% Judging 22% This makes me: moderately expressed introvert moderately expressed intuitive personality moderately expressed feeling personality slightly expressed judging personality So, translating; I have a "source of energy expression mainly in the internal world" and rely more heavily on my internal feelings and creativity than external sources. Strangely, despite being quite a logical person, I make the ma...

Subjectivity in Diagnosis   Updated in September 2020 to include DSM V. There is no litmus paper test for autism or Aspergers. The label is applied on the basis of set criteria , generally the DSM IV or more recently, DSM V which are determined by subjective analysis .  Sometimes that analysis is in the form of questionnaires, sometimes as day-long tests and sometimes it seems to be almost arbitrarily applied by practitioners.  The symptoms of autism vary from one person to another both in presence/combination and in intensity and no two people are exactly alike. If anything, the label, particularly for Asperger's syndrome is  similar to online " geek tests " and coincidentally, there is a high correlation between geeks and aspies. This isn't to say that autism and Asperger's are "imaginary conditions" but rather to say that unlike specific tested conditions where the label describes the symptoms, Here, the symptoms describe the label. An Example: De...