An open letter to Autismspeaks

Dear Autismspeaks

I write this as a man diagnosed with Asperger’s Syndrome who is a high functioning business professional, as well as a dad of two girls, one of whom has been diagnosed with Autism, the other of whom is recognised as having sensory processing disorder and autistic traits, diagnosis pending.

As I am sure you know, there is a growing movement amongst the ASD and ASD supporters community to encourage organisations to distance themselves from you, and a growing number of other Autism and other Disability charities and organisations are also speaking out against you.  I am wondering if you know the reasons why?  If you are not sure, there is a page at http://boycottautismspeaks.com/why-boycott-1.html which spells it out in great detail, but this is the official reason, if you like. Every individual will have their own specific reason.

For me, there are two things that Autismspeaks could easily change that would make me more likely to be sympathetic to your cause. I could easily say that it is your apparent drive to find a “cure” for autism, which is upsetting.  Let me be clear: I do not need to be cured, any more than gays do. My daughters do not need to be cured.  As a parent I need to find a way to adapt my life to them, not the other way around. This would be true whether they had ASD, Huntingdon’s, MS, Cystic Fibrosis, were paraplegic or any other condition, or simply if they were ultra-demanding, high maintenance people with no medical issues. Children are always hard.  This is offensive, but its not my main complaint.

Nor is your history, such as supporting the fallacy that autism was caused by vaccinations. Who knows how many illnesses or deaths in children were caused by that little gem, which history has demonstrated to be a lie concocted by a man determined to sell his own vaccination, and so spread slander about the existing MMR.  This was an awful mistake that your organisation made, but people make mistakes.

Even your support of institutions which use “therapies” that would have people trialled for war crimes is not my primary concern. Awful, but not my personal bugbear. Nor is your poor record on using your donations directly for the ASD community. We’ve all seen the numbers and they are pretty shameful.

No, my issues are simple.

Autismspeaks uses negative imagery in its portrayal of autism to get its donations (http://vimeo.com/20692567), rather than showing the positive. Yes, people with autism can be very challenging until you understand the condition, but to compare the condition to having a fatal disease, and portraying it as a tragic burden is just repulsive.  Compounding this is the claim of an Autismspeaks executive that they considered driving off a bridge when they found out their child had autism.  I wonder whether this would have been the same if they found out their child was gay.  Its just a different way of operating.  how hard do you think your imagery is for people who have autism. It is demoralising, disrespectful and hugely damaging to their self-respect.

This approach convinces me that under current policy your name should be FearofAutismspeaks.  It is a terrible message to send to people who may never have come into contact with autism before when their child is diagnosed.  It’s a horrific thing to be floating in the atmosphere of society: autism is a life sentence! No its not. Its just a word. Not a sentence.

The second issue is this: where are the people with autism in your company? Where is the personal experience not just of living with someone with it, but of living with it? Living it? I’m sure you are very well aware of the phrase “Nothing about us without us!”. It’s very much the central tenet of positive disability movements.  Autismspeaks doesn’t seem to have much personal experience of Autism, and as such, its difficult for any of us who are part of the actual community to accept you know what you are talking about.  Exceptionally so.  And what makes matters worse is when now, at this moment, Autismspeaks is under pressure to give answers to the ASD community, it seems to be pretending it is not happening.  In summation – Autismspeaks does not listen.

I am a sensible and rational man, and I would love to be convinced that you are working for the good of the ASD community, so I invite you to do it. Show me I am wrong. Show me you listen. Show me you are not simply peddling fear for dollars. Show me your ASD leadership who are helping guide policy with their experience of autism.

For the next seven days, I will not promote the boycottautismspeaks campaign, in hope that you can give me an answer and I can say “I was wrong,” and “I am convinced”. But if you continue with what appears to be a stonewall policy on criticism by the ASD community, then I will assume that your lack of answers are simply due to the fact you can’t argue with the truth.

Yours respectfully

The anonymous aspie

December, and all that comes with it

November is over, and all the excitement of Christmas is coming.

I didn't blog once during November as I focused all my writing energies on NaNoWriMo, and seeing if I was up to the amount of daily writing that it would take for me to become a writer full time. Well, quantity I can do. Quality, not so much, but its all about practice. I enjoyed doing it, and hopefully I can keep motivating myself. 

An odd side effect is that now I no longer know what to do with my free time if I am not writing!

Anyway, December in all its glory is now here, and I am both looking forward to and dreading Christmas in pretty much equal measure.  Its only a week until I have my hand surgery, and while I know that its not a big deal - its only hand-surgery after all, not heart surgery - I am pretty anxious about it, and can't keep my mind off it.  6 weeks in a cast also does not sound like fun over the holiday period.

Still, I get 2 weeks paid off work over Christmas, so that's good.

But things I am most concerned about are thusly:

• ASD Daughters getting more and more hyped up, with no space or time to calm down. Meltdown City, if last year is anything to go by
• parents coming to visit for Christmas for first time. this will add to point above, and put wife in same category. She likes my parents, but this is pressure!
• Operation going badly, leaving me less able over the period.

now I love Christmas, and everything that goes with it (other than drunk drivers and office parties) and normally I don't stress about anything like this. I just relax and enjoy it, letting the good old Christmas spirit take over, but in recent weeks, wife has declare her theory that ASD people love Christmas because they are programmed to from childhood, with everything reinforcing how wonderful Christmas should be, and we are effectively forced to love it, meaning that a bad Christmas to NTs is an absolute disaster to NNTs, and that maybe if we thought for ourselves, we would see that Christmas wasn't that great.

And I was gutted! She didn't use those exact words, but I followed through on her train of thought, and it made me sad and a little angry that she was telling me that I only like Christmas because people have told me to, and because my brain is abnormal.  It really hurt, but I couldn't tell or show her that because I felt it would only reinforce my abnormality.

It hurt, and it made me sad, and it only reinforces the feeling I have that wife and I are drifting apart, but that's a blog for another day.

Right now I have presents to wrap, cards to write and a family Christmas to prepare for.

The endless fortnight!

Last week I attended my final session with the psychologist team responsible for my diagnosis. They were very nice, very supportive and made me feel at ease. For the first time I can remember I went into a situation knowing that I didn't have to wear my mask, didn't have to watch what I said or how I said it. If anything, being careful of what I said and how I said it would potentially hamper the process.

At the end of the session they said that they couldn't tell me anything until they had made their diagnosis, but the lead professional did say that given the evidence, the diagnosis of Asperger's was a very real possibility. But it might take up to to 3 weeks for them to make their diagnosis, at which point they woudl get back to me for one final session where we could discuss the outcome.

That was a week ago.

I'm not sure how patiently I can wait over the course of the next few weeks. to me, the question of aspergers was resolved long ago. i mean, i wouldn;t call myself anonymous aspie if I didn't think I was aspie, but there is always danger in self-diagnosis that there is a professional that will come along and argue with you.  My problem is that, no matter how sure I am that I am aspie, until I have a confirmed diagnosis from a medical professional I will not be happy.  Basically, its not good enough that I know the answer, I need someone to acknowledge that I am correct (which is, sadly, part of my Aspie brain - "VALIDATE MY ANSWER! CONFIRM MY CORRECTNESS!")

I know its not long but it is becoming the longest wait fo my life, longer than waiting for my kids to be born - no, wait, they were both premature. That's not a good example - longer than waiting for the next series of Game of Thrones!

2 Weeks. I should know by October. That's not too bad, right?

Right?

Topsy turvy world

What a few weeks its been!

I had a meltdown at work. A full-on, screaming,  body-shaking uncontrollable rage meltdown which resulted in me going fully overboard, quitting my job and storming out.  There's more to the story, and it involves me putting a formal complaint in against the head of the department and working out my notice once in was assured that I wouldn't have to work with her.

But it was awful. I have never felt so out of control, so helpless and so frustrated and so ANGRY! I swear that woman deliberately goaded me into the meltdown, just so she could fire me due to my reaction.

Anyway, I left.

So, jobless, panicking, wife starting college, daughters just started school after summer holidays. For someone like me who thrives on routine this was as traumatic as it could have been.

So I work out my notice and on the last day, last Friday, I still did not have a job to go to. Terrified for what the future was going to bring for me and my family I left the workplace almost in tears. I was happy I wouldn't be going back there to work with that bullying, discriminating bitch, but just so worried.

And on Monday I had an interview, which by Tuesday had become a job offer and by next Monday will be back to full time gainful employment.

Awesome!

It just goes to show that sometimes throwing yourself into the abyss of uncertainty can have positive consequences. I have taken myself so far out of my comfort zone by doing this, but I think in the long run it will have positive benefits, not only taking away the stress of working in that place for that woman but just for the experience of having taken a leap of faith and have it work out.

The Process

On 21st of August, in a small, secluded little collection of buildings, I began my assessment process.

It has taken a year or so to get to this point, and the outcome is not guaranteed, but I have no words to describe the immense sense of relief to be talking to experts, discussing Aspergers as a condition, to be undergoing diagnostic process, to be able to just let go and tell someone who might understand just how hard it all is on a daily basis; how hard it is to care, how hard it is to make sure I am giving appropriate responses, how hard it is to keep control of my tongue and make sure that I'm not inadvertently offending the world.

I have seen them 3 times and they have decided they have all the information they need to consider what, if any, diagnosis there will be.  While they couldn't say for sure, they did say that there is a very good chance that Aspergers would be the diagnosis.

And I got an odd rush of emotion; sadness, anger, anxiety and relief. I had to take a few minutes to sit in the car on my own quietly just to let it all sink in.  Finally, maybe, I have a framework to help me understand myself. But isn't it funny that I need someone else's permission before I can fully grasp it?

...and that's how i got banned from Tesco.

Its amazing how the little things you don't think about get you into trouble. Let me tell you a story.

Today I went shopping and took me eldest daughter with me. She is 5 and has autism

As I always do, just before we left I asked her to go to the toilet, just to make sure we were safe for the hour or so that we would be out.  I hadn't taken into account the amount of fruit juice she had been drinking in the morning. So it came as something of a surprise to me when she decided to tell me in a quiet voice, at the farthest away part of the store, on a busy Saturday at 2pm that she needed to go to the toilet.

Immediately I size up the situation. Not going to the toilet is, not an option. She can't really hold it and will melt down if wet. I start moving in the direction of the facilities. It's busy, so I am dodging in and out of trollies and people, causing a certain amount of havoc as I go against the flow.  Thinking on the move, I consider that I don't have a change of clothes, that she will not be able to cope with having wet pants and trousers, and so I determine I need to get there as quickly as possible and speed up. Credit to my girl, she sped up too, but not quite as fast as I would have liked.  By the time we reach the toilet I am practically running, dragging her with me.

I abandon the trolly outside the loos and aim straight for the disabled loos - Engaged. argh! Without a break in stride I hustle her into the men's toilet - 2 cubicles, both occupied. Dammit!

By this point she is dancing and whining, but all I can do is tell her she has to wait.  As I am looking for a solution my eyes alight on the urinals...

And I get an idea.

So, quickly whipping down her trousers and pants, I lift her up and hold her over the urinal. Genius me!

"right" I say "use the toilet".

And frankly, this is where I went wrong. For, you see, I hadn't asked her what she needed to do in the toilet. Imagine my horror when I feel her tense up and start to strain.  And sure enough what I assumed was going to be number 1 was number 2.

And with perfect timing a cleaner enters the toilet as I am trying to figure out how to clean her bum without access to a cubicle. He takes one look at the accusatory turd in the urinal. A quick radio message to security later and I am being asked to leave the premises and not come back.  

But I do not leave. I explain to them about autism and the likelihood of a screaming fit if they force me to leave now plus I already have a trolly full of food outside that they will have to put back on the shelves, so grudgingly the security person allows me to collect the final item on my list, pay for my goods and leave I peace but not before reminding me that he mows my face and if I return the police will be called.

Strangely I find this funny rather than annoying. I'm sure I can resolve it with a letter to the manager but what a way to spend your Saturday morning!

Not knowing is the worst!

In the next 3 days I am seeing a psychologist, and occupational therapist and undertaking an exam on accounts. I am also meant to be undertaking a project for my accounts qualification, but am currently 2 months behind and it is the last thing on my mind.  As well as that I have numerous projects going on at work that I am trying to complete within certain deadlines.

And its all very stressful.  It feels like  my time off for stress has had little or no impact on my work. I still feel under pressure that I am not sure is actually there. 

So tomorrow's psychologist appointment is the first in what I expect will be quite a number of appointments, or just a few strung out over a long period of time, to find out if i am likely to be diagnosed as ASD.

I'd like to say the diagnosis isn't that important to me, but it is. I'm that sort of person. I have to know. I can't just make a self-diagnosis, or have my doctor say "maybe its AS."  I have to know or I will obsess about it forever.  And as it is it is the thing that is on my mind virtually every minute of the day.

Its such an odd feeling, and it does make me anxious that I may have AS. I know there are people who would frown at me for saying that but it does.  Not because of what it is, but because I would have had it for so long without realising, without it being diagnosed, and in a lot of ways it means I don't know myself.  If I knew that I had something that affected my social interactions I would have looked into it and tried to integrate better, rather than assuming that other people have always got it wrong about me and are idiots.  I am open and honest, and very loyal to my friends, but I have damned few of them because I don't come across well on first meeting (except to other people who are similarly unusual, I have found) and this is part of my frustration.

I wish I had known.

But I also have anxiety the other way; that the psychologist is going to say "actually, you're pretty normal. you don't have ASD".  I can't believe it would happen, all things considered, but I can't help worrying about it.  I genuinely don't know what I would do.  I need other people to understand how it is for me. I need acknowledgement that I have these issues. My whole life has been a trial of frustration, loneliness, resentment, outbursts, inexplicable rage stupid, unjustifiable decisions (to any NT person), and as I have got older pretty regular periods of stress and depression as I fail to find a way to cope with my life.

I'm not looking for an excuse, but I do need to find who I am to find how to cope

The agony of work

Anxiety.

Its my constant companion. From the moment I wake up in the morning until I go to sleep at night I am either feeling anxious about something or awaiting the next visit from the anxiety fairy.

It is at its worst when I am at work, and my mode for combating it is to sink into the job itself as much as possible and to shut out the outside factors. However, this is not always possible for two reasons

1. I work in quite a busy office environment which is open-plan and always has at least 4 members of staff
2. I'm the admin manager.

Being the Admin Manager means that I am a destination, and that people want to talk to me and ask me questions. As long as they relate to the process of work, this is fine. I can handle that. But when it comes to gossip and general office chat I am not so good.  There is a lot within conversation that isn't said, so many significant glances, nods of the head and in-jokes that are over my head.

I find it difficult to judge whether people are deliberately talking around me as they don't want me to know something or whether they expect me to be able to interpret this implicit sign language.

I can't.  I just can't.

Dealing with my boss is very difficult as well. While I can interpret most conversations (I think) I find it difficult to deal with her very definitive yet vague statements of "you know what needs to be done. Please sort it out" because I very often don't know what needs to be done, and I hate sitting looking at her blankly, and having to say "no I don't".

I also hate the fact I can't play the office politics games.  NO, scratch that. I hate the office politics games.  I can't bluff, disseminate, use delaying tactics or distract by switching people's attention to another topic. it doesn't work for me and even trying just makes me more anxious.  If I haven't done something I will say so, unlike some of my co-workers who will claim they are "nearly finished", or that it is ongoing.  The worst thing about it is that I am the one who ends up looking bad and ineffective, simply because I have been honest in my appraisal of my own work.

And of course people don't realise that this bothers me because even I'm new to being AS, and I certainly don't expect my co-workers to take it into account. Why would they? It really is my issue to deal with.

Every day I have to remind myself that no-one is doing any of this to deliberately upset me. Every day I try to bury myself in the work and interact as little as I need to. Every day is a struggle, but its a struggle that I feel I am getting on top of as I accept my AS nature.

Missing the obvious point

My biggest problem, I feel, is that I miss the obvious.  I can sometimes see a lot within a situation which other people miss - particularly if its a repetitive process - but I really do have a blind spot for the immediately obvious and the long-term consequence.

Today's example is this:  Wife and I were talking about the fact that school happens again in about 10 days, and she was saying she's not entirely looking forward to going back to seeing all the other parents and having to deal with them, and I jokingly suggested she find a job that pays the same as mine and we swap. She laughed a little, then said "if I thought you could handle it, I would give it some serious consideration".

I was a little taken aback.  "what do you mean?" I asked "I can certainly do the housework and get the kids to and from school". "Yes," says wife "but can you cope with the parents? Can you cope with the small talk? Can you deal with them watching you, how you treat your kids, judging you?"

"Dead easy," says I, "this is where I have the advantage of not giving a fuck what other people think of me". At that point, eldest daughter comes into the room and announces she needs the loo.  Cue a break in conversation.

When wife comes back she says "I find it hard sometimes that you completely dismiss things that I think are important. I don't make small talk to impress people. I don't often want to spend time talking with them, and I don't really care about them judging me, but our daughter has Autism and they will judge that, and they will judge her, and the only way that we can try to break down the barriers caused by her being different is by being friendly and accepted.  She is going to need friends, and we can't afford to alienate the parents of people that she wants to be friends with."

And with that statement I suddenly understand. Her concern for how she is viewed is nothing to do with her, or with me, but to try to ensure that there are people watching out for our eldest when we're not around: people who will accept her odd little ways rather than trying to change them, people who will accept her, not ostracise her and most importantly try to make sure that people see her first and foremost as a lovely little girl, not some sort of disabled weirdo.

And without that conversation, I never would have understood. I would just have gone on thinking that she spends too much time worrying about what other people think of her, and not understanding why.

I love my wife. In all the world she is the only person who has ever been able to get me to see someone Else's point of view, and right now i think that might be the only thing that will enable me to be the dad I need to be.