Wanting the Label

This is going to be my most controversial post to date and if you don’t read this through carefully you will probably get offended. Even if you carefully read this through you may get offended, especially if you feel it’s about you. Neurotypicals need not fear for this post is aimed at certain people in the autistic community. I still think I need to write this because I’ve been thinking about it for ages and even though I was going to wait until April to write it (Autism Awareness Month) I feel like I have to write it, today.

For starters, not one other disorder comes to mind that has the staggering amount of self-diagnosis in adulthood like Asperger’s syndrome has. ADHD is a close second but people usually come to that realisation when their life is spiralling downward and they might only get diagnosed to see if this medication actually does as well as those prescribed to it for years say it does. Rarely does one hear of mild ADHD or ADHD without medication. For those that choose to be without medication it’s usually a hard road of trying to control symptoms through supplements, herbal remedies, bio-feedback, meditation, exercise and healthy eating. Not one person I’ve met has had mild ADHD that has the label applied to their name. Such is not the case with a growing number of people with Asperger’s syndrome.

I can understand the relief one feels when those issues they’ve had for most of their life begin to make sense, I’ve been there and I’ve been through the whole self-diagnosis thing but the danger with this is that the self-diagnosing never stops. If you have this one disorder then what’s stopping you from having this other one? After all, you were so right about Asperger’s so maybe you could have dyslexia, dyspraxia, NVLD, ADHD, BPD, APD, Irlen’s syndrome, etc. But it won’t stop. I was the same and had to be criticised by someone who I would not hesitate to call a sworn enemy (not a family member) that I was essentially ‘collecting’ ailments. I just got caught in a loop, so now I only really self-diagnose with something that I have a significant amount of impairment in.

When I was a child I met the criteria for selective mutism and pathological demand avoidance syndrome. I still have remnants of those disorders because I developed them so early in life and they affected everything about my life and what people thought of me, but now I don’t meet the criteria for them in the way the disorders were first thought up by a group of doctors wishing to treat them. I still get ‘shy’ around strangers if I’m not on medication. I hate the word shy being applied to me. I had severe social anxiety as a child that rendered me mute in certain environments. To be called shy is a denial of my disorder. I still have PDA too but the controlling symptoms are more about helping people get the best out of their short lives and the only negative part is that I still avoid doing some tasks if I don’t agree with them. Once agreed I will do them. It’s all on my terms. But my disorder is not so severe to be diagnosed with it. In fact, I think PDA is the most accurate form of autism for me. It’s disappointing though because if I had known I had this sooner I wouldn’t have been such a stubborn child, or maybe I’d completely deny my diagnosis – I’ll never know though the latter seems to fit just right with who I was back then.

What I’m getting on is my critique on the people with mild Asperger’s. Now I know some forms of mild Asperger’s can be impairing (I’ll discuss it in more detail soon) but there are some people who came upon the realisation that may have had Asperger’s as a child, or were diagnosed as a child but have recovered from those symptoms in such a way they hardly show anymore symptoms yet they still say they have Asperger’s. There is some notion going around the autistic community that you will always be autistic, even if you don’t show symptoms. They say this because the autistic brain is wired a different way – one the human brain is not a machine, it’s organic. Man just imitates it by the machines he makes. The autistic brain developed differently and some areas don’t communicate well enough with each other to work as effectively as the neurotypical brain. Even the autistic brain can make new connections, daily, through learning and experience, and just using it. The hard part is figuring just how it can learn. So, if a child is born with it and only shows mild symptoms by their adulthood they may show very little signs of Asperger’s. We must stop this notion that born autistic means autistic forever. The only reason why the name autistic even exists is because it’s a developmental disorder that may require supports to help an individual function better in everyday life and in school and in work.

There are people that think that previously having Asperger symptoms means that it’s still alright to go get diagnosed, and there are doctors that will still diagnose it. No one gets diagnosed with ADHD when they no longer have it. Nobody gets diagnosed with dyspraxia if they are a bit clumsy. Dyspraxia is an interruption between the brain and motor movements. Nobody gets diagnosed with mild dyslexia. I had pneumonia when I was 13 – maybe I should just go to a doctor and get diagnosed with that. And what I call learning disorder – NOS. I had my treatment for my learning disorders. I used to need help with reading and writing and math. Now I can handle all three, math to a lesser extent but get some medication in me and I can get a clearer picture of it.

You see what I’m getting at? Then there are those people with Asperger’s that get these crazy ideas like being the next step of evolution. I’ll warn you you have some competition; dyslexics and people with ADHD come to mind. In fact, most people with neurological disorders or even the blind adopt a superior form of thinking about themselves and then come to the decision that there’s really nothing wrong with them. They don’t need to be cured. I say this to them: if what you have is just a difference and not a disorder, drop the label, don’t get any supports and then tell me that you can cope just fine. You may as well call yourself straightedge when you decide not to drink. Ha, I’m going to get it for that. Like I care. You can choose to do what you want but when you add a label it’s like you are parading it around.

It’s normal human behaviour for a group of people who feel left out of society to want to overthrow them and become the dominant power. This is true for many medical disorder communities. One, it makes people feel better about themselves but then they completely lose sight with reality. People don’t say you have a disorder to round you up like cattle and cage you off, they want to help you get the best out of life.

Asperger’s is a disorder and can be really impairing, confusing and depressing for those with it. The main symptom should be a lack of communication which involves little speech (i.e unwillingness to speak) to impulsive speech and a lack of knowledge about the social rules; a poor theory of mind which is like putting yourself into other people’s shoes; a poor ability to read body language and tone of voice; and your own lack of body language: looking at people, moving your hands when you speak, flexibility with your tone of voice. It all differs from individual to individual but this for me is that most significant impairment in Asperger’s.

Some people with Asperger’s have a learning disability and some don’t, in fact some excel in verbal skills but suffer in communication skills. Some can speak early and reach all their milestones but have an inability in other areas which significantly affects their life, their emotional development.

Other symptoms include an aversion to change, need for routines or repetitive behaviour, varying sensory issues and poor motor skills. There also may be a co-morbid disorder; a second disorder that impairs them to a degree that is separate from their Asperger’s. Some people even have difficulty learning new things and need it explained to them in a step by step way. People with Asperger’s have a great memory for factual information and a very detailed long term memory but because the frontal lobes don’t communicate effectively with the rest of the brain, short term memory which is temporarily stored there will suffer, so some things slip their minds.

They can be strong in a few areas and weak in others, either extremely creative or have a natural affinity with numbers. Rarely will you find someone that is both. Personally, I feel it’s better this way because the human brain is all about balance, when one area becomes more dominant disability may happen but more attention can be put in this one area that can turn a struggling individual socially into a mathematician or original artist or I dunno, some type of find-a-word savant? And because they tend to have an intense amount of focus on one or two subjects if they choose to make a career out of it they can really excel. Looking at a situation realistically doesn’t often occur to them (in my case, at least). It’s not always that case though and sometimes the negative symptoms outweigh these positive traits. I mean I’m a writer now but I had to overcome a reading disorder so most of my life I have been focused on more artistic pursuits.

The more mild diagnosis has escalated the diagnoses of autism. Is it any surprise that numbers have skyrocketed in the last 20 years? Maybe it’s got something to do with the MMR vaccine (I’m not touching that argument with a 100ft pole) or maybe it has something to do with the fact that there are 7 billion people now populating this blue/green planet of ours. The autistic spectrum has been broadened and doctors believe that the line between autistic and neurotypical has been blurred. By 2013 the autistic spectrum will be merged into autistic disorder and be judged on severity levels. Most people with Asperger’s will be level 1’s and they need not fear because it’s not like they have to be re-evaluated – only people seeking a diagnosis or without a diagnosis will be effected.

I hear parents worrying about what will happen to their children once the change happens. One, it will take many years for Asperger’s to completely disappear and two, did they actually need all that support? Maybe they need some support but paying some private therapist a whole stack of cash – that’s always seemed kind of iffy to me. I had no IEP, no special schools, no occupational therapist and there are many people like me that are the same. I know you want the best for your child but I think all the treatments and support is going a bit too far. It’s also making the child feel like something is wrong with them. You’re probably offended by now but all I am saying that if your child needs help you need to be the one helping them. Save your money, stop wasting time on diets not proven by credible scientific research, and just enjoy them for who they are. Remedial classes and social education is one thing but sometimes I think it’s gone too far. If your child has four diagnoses to their name and are starting a cocktail of medication, you need to start thinking is this best for your child. Medication can do worse than good, permanently. I will only stay on one form of medication and never mix it with anything. I will not take anti-anxiety medication, anti-depressants, not even anti-epileptics.

I hope I didn’t offend you I’m just adamant that some children don’t need the extra support.

If you think you may have Asperger’s syndrome but have managed to get through life without a diagnosis: you work, have a family, can have relationships or may be able to do small talk for a little while; you may just want to keep reading.

I have been studying certain Asperger individuals carefully over the years, from those seeking a diagnosis to their life after it. A diagnosis can change you. The good part is you might be more open minded to people with a disability, not be so quick to judge crying children in a supermarket and it gets you to read a whole lot. The negative part is that you might become depressed thinking that you’ll always be this way. You might become proud and think you’re better than people without autism, definitely those that used to pick on you. The problem with this is you might think everyone who isn’t autistic is like that. You may think your symptoms are getting worse, and this is different from regression; regression involves brain damage – what I’m talking about here is being influenced by other people on the spectrum to think that you may start showing symptoms after you read about others having them. It is possible to mimic autistic behaviour when you hang around people too. You get caught up in arguments emotionally driven and heated that the rest of the world outside of the community barely thinks about, and most of the time it’s triggered by misinterpreting sarcasm or not admitting you were in the wrong – and the spiral continues. You may feel yourself so superior for having Asperger’s that you try to distance yourself from the severe end of the spectrum.

This diagnosis will change more than just the way you look at yourself. Now for me I’m into the community and write this blog because I want share with people and get them to get a clearer understanding of what it’s like being me and I participate in the forum to be with like-minds and then rationally call them out when they become too proud, pick apart the diagnostic criteria too much or when I get in a situation that I can’t see an answer to. I needed to be diagnosed though. I was so unaware of my social issues and my basic skills issues and I didn’t know why I couldn’t get a job. It saved me from severe social anxiety and worrying about never having another relationship. I’ve gone through the five (or fifty-five) steps of mourning and now I’m just really positive about making more developments. I’m on disability, have extreme sensory issues that can disorientate me and give me migraines. I have something that could be classed seizures but I’m unsure. It could just be hypoglycaemia which no one will diagnose me with even if it gets to a critical condition. My medication helps me socialise and while on it I can work on social skills. I don’t like to socialise a whole lot, I need lists to help me function, I need routine and every special interest I have serves as research for my book. Fact is, I’m still autistic. Maybe when I actually work and get a social life that lasts for longer than a few hours a month I’ll drop the label. For now I need it – do you?

A plus side to this post is that I’ll probably get a lot of comments. Backlash, mostly, but comments nonetheless. I hope you can see what I’m doing here: reclaiming autism as a disorder. Enough of this it’s just a different way of thinking or calling it a ‘condition.’ I’m not a nervous 10 year old with Asperger’s that must be reassured he/she has nothing wrong with them. I know I have a disorder which limits me but at the same time I can focus on my strengths which may or may not necessarily be from the same said disorder.

Note: I have no quarrel with people that self-diagnose, only those too mild to be diagnosed with a developmental disorder. Autism is not a gift. We are not all savants. We have a disorder that we need to learn to overcome. We have strengths, yes, but those will always be with us as long as we choose to stick with them. We are most certainly not the next step in evolution; such thinking is arrogant.

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