My views on the latest autism statistics

A couple of days ago, new autism prevalence statistics were released by the US Centre for Disease Control and Prevention indicating that one in sixty eight children have autism (http://nationalautismassociation.org/autism-now-affects-1-in-68-children-1-in-42-boys/) A close friend of mine who also has Aspergers Syndrome shared the link with me on my Facebook page. Being completely honest, reading that article made me quite angry and below I will explain exactly why (some of this overlaps with post content from a previous blog post “The Cure Debate” but these are issues that I feel need addressing).

Firstly, I do not see why the issue of autism prevalence in the United States is being discussed by an organisation that has “Disease Control and Prevention” in its title. The dictionary definition of a disease is “a disorder of structure or function in a human, animal, or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury”. Now maybe it’s just the inner Aspergers pedant in me but the variety of conditions that make up the autism spectrum cannot be traced to a single disorder of structure or function that produces specific symptoms. As anyone who has any knowledge, either personal or professional of autism, will be aware of, no two people with autism are the same. Their symptoms are often hugely varied from each other and years of research has failed to pinpoint an exact cause for why the brains of people with autism and associated conditions are “wired up” the way they are. Also I think it may be a cultural difference but, in the UK, most people use the word “disease” to mean something contagious, not the image I want people to have of autism in any way. To me, this negative association is backed up by the words “control and prevention”. Autism is not a pest that you can eradicate and, in my opinion, nor should you seek to but that’s something I’ll get onto a bit later.

The article also doesn’t distinguish between the different conditions that make up the autism spectrum. Are they referring only to classic autism (sometimes referred to as Kanners Syndrome as it was first written about by Leo Kanner) or are they including the higher functioning variants of the condition as well? I must clarify that, to me, functioning labels matter little as I am all too aware that two people on opposite ends of the spectrum can experience the same symptoms but are separated diagnostically purely because of an IQ score or the development of language. I have met people with Aspergers who have the same sensory issues and behaviours arising from these sensory issues as people diagnosed with severe autism and associated severe learning disabilities. The only reason I am questioning this is that both Aspergers and high functioning autism are, certainly in the UK, becoming widely recognised as potential diagnoses when children are struggling socially in school and so I would guess (and it is purely a guess so may be completely wrong) that these make up the bulk of new diagnoses and the bulk of the increase in diagnosis rather than solely those with severe autism which is what some people would have you believe.

Also the article talks about treating the issues that autism causes but they write about doing this through “combating autism”. Again, this is language that indicates war-not exactly conducive for the self esteem of someone with autism (and, despite what research may show, having worked with children and adults with severe autism and learning disabilities for the past five years, I can say for sure that they do recognise attitudes in their family members and caregivers and respond accordingly). I accept that there are issues often associated with autism that do make life hard and exhausting both for the families and for the people themselves-insomnia, erratic sleeping patterns, a limited diet, associated disabilities, associated conditions such as epilepsy, immune conditions such as eczema, asthma and various allergies, stomach conditions and challenging behaviour, often resulting from anxiety and frustration. In my work, I use therapeutic techniques and administer medications that help to alleviate these symptoms as much as possible. However, I also find what helps is understanding. A lot of stress and anxiety in autism can be alleviated if the person communicating with them tries to “get inside their head” and think why they are behaving in a certain way. People with Aspergers Syndrome are often highly adept at finding coping mechanisms-we have to be to survive in this world. With people with severe autism, we need to help them find the coping mechanisms that work for them. It is a long, slow process and can be hugely frustrating because triggers for meltdowns and shutdowns can change over time so what used to bother them five years ago doesn’t bother them so much anymore because they have been taught coping mechanisms to deal with it but something they were fine with last week suddenly is a source of extreme anxiety. However, once the additional symptoms are being alleviated or dealt with, you can see their true personality and I can tell you one thing-all of the autistic people that I have worked with and met personally over the years have been huge personalities with unique and special characters. There are positive sides to autism and I know it can be hard for the parents of a child with severe autism and challenging behaviour to remember what those positives are when it is 3 am and they haven’t had any sleep for the past week but they are there. Most parents of children with autism, from what I’ve seen, would not exchange their child for anything-they just want to deal with the problematic symptoms which is something I don’t have an issue with-I just think people need to watch the language they use when they refer to this goal.

Also people have a stereotyped view of autism-as mentioned before, no two people with autism are the same. I have worked with children with autism who have not needed strict routines or who present with few sensory issues when most people would see these two things as core aspects of anyone with autism. I read in a TV magazine today that Horizon programme is going to focus on autism this coming Tuesday. In the blurb, one particular comment struck me-“Why do they often fail to understand humour?” Perhaps this question should have been phrased, “Why do they often fail to understand word based humour?” In my experience, a lot of autistic people find humour in slapstick comedy and practical jokes. I am willing to bet that every autistic person in this world, even those who are deemed to be completely in their own worlds, have something that makes them chuckle. Therefore, how can you say that they fail to have a sense of humour? What you really mean is that they don’t get YOUR sense of humour. There are also people with Aspergers and high functioning autism that have mastered sarcasm and can use verbal humour very well and understand it. I used to have a very literal sense of humour-my jokes always had the correct answers as I had worked the punchline out myself-does that mean that they were not funny to me? Not at all-I still laughed at them!

My final issue is that they seem to focus purely on the environmental factors when it is strongly suspected that autism has a strong genetic component. I remember having a conversation with someone once who said that the reason they thought autism rates were rising was because the social awkwardness that is inherent in Aspergers Syndrome is actually becoming a lot more tolerated in society compared to how it was 50 or 60 years ago and so people with Aspergers Syndrome are now seen as potential “mates” where before they often weren’t. It was an interesting point of view although a bit cruder than I would have liked. There are lots of parents of children with autism who have Aspergers Syndrome or high functioning autism themselves-would people like us to stop breeding so autism can be eradicated? Extreme view, I know, but I’m playing Devils Advocate here-where does this sort of thinking stop?

I do actually agree with the essence of what the article is trying to say-that there needs to be better support for vulnerable people with autism and that this needs to be ongoing support rather than finishing when they leave school/child health services. However, I believe this can be achieved without aggressively seeking to combat autism. Yes, autistic children are often horrendously bullied by other children, either at school or in the community. However, setting up an Autism Awareness programme and educating these children about autism and difference could make a huge difference. I know that some people, for various reasons, will never change their stance on autism and will always find it fun to taunt them but, for most people, particularly children, their behaviour is borne out of ignorance and, if they can be educated early enough, they may surprise everyone and turn out to be thoroughly nice people. Yes, there are high levels of comorbid conditions such as depression and anxiety in people on all levels of the spectrum but how much of this is down to living in a world that is insistent on changing them and forcing them to fit in? I have seen autistic people being asked to stop self stimulating when it is the only thing that is keeping them from having a meltdown due to stress. Live through decade after decade of this and is it really such a surprise that so many people on the spectrum have attempted or go on to commit suicide? I support change for people with autism but I also believe firmly, and will do until the day I die, that this can be achieved without making people feel bad about being autistic which is what statements such as “Combat Autism” do (and, believe me, even people with severe autism can feel bad about themselves when they pick up from other peoples attitudes that it is always them with the problem). I personally think that autism is definitely here to stay but that isn’t such a bad thing. Embrace it and you will see that autistic people actually have a lot to teach the world. Please, please think about the language you use and think about the lessons you could actually learn from the people you know with autism, whether verbal or non verbal. Try and get into their minds and see the beauty in their unique way of thinking.

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The hidden aspects of Aspergers Syndrome in adulthood.

Disclaimer-this is my experience of Aspergers in adulthood-I am aware that it is not the same for everyone on the spectrum.

Being too fearful to speak on the telephone to sort out various parts of what being an adult is all about but not being allowed to have someone speak on your behalf because of Data Protection rules. 

Trying so hard to cope with life that, when you are struggling, nobody understands why because it’s hard to understand how someone who seems so logical can have a breakdown over the tiniest thing that most people don’t even notice.

Executive functioning issues leading to difficulties with organising yourself. 

Being overwhelmed by the hectic pace of life to such an extent that you simply “switch off”. 

Struggling so much with making choices and decisions that you genuinely can’t choose and instead “zone out.” 

Always misunderstanding the context and meaning of what people are saying to you and then embarrassing yourself as a consequence. 

Having to rely on structure and routine to function the best that you can with the result that a lot of people find you “boring”. 

Desperately trying (and failing) to multitask in an environment where there are lots of different noises confusing your brain greatly. 

Feeling the stress and anxiety building inside you but not being able to do anything about it because you know people won’t understand why you need to behave in certain ways so waiting until you are in a safe and private place and then letting it all out in ways that would probably scare people if they were to witness it. 

Trying so hard to fit in with other people but never quite getting it right and instead being disappointed time after time. 

Constantly criticising yourself for small mistakes even years after you made them. 

Feeling like you are living in a world that doesn’t compute with your brain and punishes you for that fact on numerous occasions but knowing that your feelings are probably playing tricks on you. 

 

Travelling abroad when you have Aspergers Syndrome

I would consider myself a fairly seasoned traveller. I used to go on family holidays abroad regularly as a child and try to go abroad at least once a year. I have a fascination with learning about other cultures and experiencing these first hand and holidays help me to experience this. 

When I left university in 2008, I went travelling with a close friend of mine from university. We travelled around Thailand, Hong Kong, Australia and New Zealand. I loved every minute of it and my only regret is that unfortunately, due to finances and the fact that I had a new job to come back to in the January, we only spent 2 months abroad. I could have easily done with six months travelling time. Last February. I experienced flying on my own to Trinidad for the first time to meet friends out there.

I know that, for most people, travelling abroad poses no problems but, for me and doubtless also for other people with Aspergers, it is a concept that fills us with anxiety. One example is my paranoia around security controls at airports. I know on an intellectual level that there is nothing criminal or illegal in my suitcase or hand luggage and that nobody else could have gained entry to it (I always padlock my suitcase) but that doesn’t stop me wondering whether something will have magically found its way into there and get me into serious trouble. I am always relieved when my bags are given the all clear even though I know that they will be. When something on my person sets off the metal detectors and I get bodily searched by security staff, I absolutely hate it. I don’t like being touched by strangers especially at such close range but, of course, there is no justification to my knowledge of refusing to be searched without sparking off suspicion. Immigration officials unnerve me too even though, again, I have no reason to believe that I will run into any trouble with them. I am always relieved when I am finally sat on the plane and all of the nasty experiences are behind me.

Last October, I experienced a horrendous time when my boyfriend and I flew to Prague. Despite assurances from Czech Embassy officials that he did not require a visa, when we got to Prague Airport. my boyfriend was refused entry due to not having a visa and we had to fly back again, My anxiety was at ridiculously high levels that day but we got through it and we eventually got our weekend break in Prague this February. It is a day in my life that I will never forget though! I was surprised that we survived the ordeal without me being reduced to a nervous breakdown!

When it comes to the holiday destinations themselves, I am not spontaneous at all. I am not the sort of person who can turn up in a country and ask for the nearest cheap hotel (as a lot of people I met on the travelling circuit did)-I need to know before I travel exactly where I am going to be staying, how far it is from the airport and I need to know that it is already paid for. If possible, I book excursions before I go away too so I know my itinerary. I envy people who can just fly somewhere and pick a hotel when they get there but, for me, it’s impossible as I would spend the whole flight to the destination panicking that I wouldn;t be able to find anywhere that suited my needs and desires.

Once flights and accommodation have been sorted, I would actually say I am quite relaxed when I am on holiday. I have issues with heat and sunlight which can often make me feel quite ill but, if I avoid the times of the day when the sun is at its hottest and always try and find some shade, I am OK. I love sitting on Mediterranean marinas looking out to sea while having my dinner or a drink. I love meeting the local people too.

I would recommend travelling to anyone with Aspergers but make sure you have a precise planned itinerary first to make sure that you keep your anxiety level as low as possible. Make sure you always have enough money and means to contact people in an emergency and then try and relax and enjoy your holiday. I never thought I would be able to fly Trans Atlantic on my own but I did it! We need to push ourselves at times to see just how much we can achieve.

As for me, I’m now thinking of where to go next!

 

The Blame Game

I have written on several occasions on this blog about people not knowing how Aspergers Syndrome presents itself. Today I am writing about people who know all about Aspergers but twist their knowledge in order to blame those of us with Aspergers when their behaviour upsets us. To me, these people are ten times more destructive in our lives than the ones who lack awareness of Aspergers as at least the latter group can be educated. The first group have no interest in changing their views. 

I should point out at this stage that, proportionately, the number of people who take this approach is small but large enough to cause problems. Throughout my life, I have come across people who behave in offensive and obnoxious ways only to say, when I have become upset by this, “It’s your Aspergers! You’re taking it too personally!” Or variations of the above sentence. From reading several online discussions based around this topic, it is plainly obvious that other people with Aspergers have experienced this too. 

I am willing to accept that I have difficulties interpreting people’s body language and I often struggle to get the contexts and nuances of conversation. However, I can tell when somebody is being obnoxious or disrespectful and, to me, using someone’s condition as a scapegoat to absolve yourself of responsibility for your own offensive behaviour is simply cowardly. Yes I am aware that I often take things personally but I am usually extremely tolerant of other people so, for someone to upset me, the boundaries have been pushed too far. This has nothing to do with Aspergers and everything to do with treating other human beings with respect and compassion. 

This attitude that any offence taken is the result of an individual’s Aspergers Syndrome is completely the wrong attitude to take. If offence is always blamed on our communication difficulties, it conveniently means that the onus is on those of us with Aspergers to “toughen up” rather than on the other person to behave in a respectful manner. People will never change their manner or their personality if there is a scapegoat they can lay the blame on instead. What better scapegoat than an autistic spectrum condition which causes difficulties with communication and interpretation? 

Of course there are occasions where people with Aspergers and people without the condition misunderstand each other in conversations and in daily life and that is something completely different to what I am talking about in this post. There will always be misunderstandings as the way we think and perceive the world is different but what I am referring to is obnoxious behaviour, including bullying. We have feelings and emotions like everyone else in this world-please respect that. If we are upset at something that has been said to us, speak to us, listen to our answers and try to understand why we are upset rather than just blaming our condition in a bid to dismiss our offence as not real or worthless. I would never do that to you so please treat me and others with Aspergers Syndrome with the same respect.