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Wednesday, 18 December 2013

A2's guide to a low stress christmas for ASD families

I love Christmas. Always have. Even through my awkward teenage years when visitors were welcome but I would sit silently in a room with them.

As I have got older, it has become even more exciting for me, and with the addition of 2 kiddies to the household, I don't think it could be bigger.

Which also means its stressful!

Having a diagnosis myself as well as 2 kids on the spectrum means that to have the opportunity to enjoy christmas, we need to follow a few rules, and I think that these might be pretty useful to other people in a similar situation.

So, here goes.

1 - PLAN! Spontaneity is nice in its place, but at Christmas, ASD children will be getting wound up in a way its hard to calm them down from. The entire world is throwing Christmas excitement at them. So, have a calendar, or a wall-planner, or a visual timetable they can see, and talk them through what is happening each day so they know what to expect.  At the moment mine says

Dec 18 - School all day
Dec 19 - School half day then playing at home
Dec 20 - Take Daddy to hospital/ playing at home
Dec 21 - Daddy's Birthday
Dec 22 - Playing at home
Dec 23 - Granny and Pappi coming
Dec 24 - Christmas Eve, Uncle AJ coming to stay
Dec 25 - Christmas Day: Uncle AJ, Granny and Pappi visiting

etc..We also always make sure we have a laminated sheet like a social story which has details of what is going on at each point through the day. this gives them much-needed structure and routine.

2 – Minimise unexpected visitors. I know this one seems a little odd. How can you minimise the unexpected?  Well, consider who the most likely people are to come visiting, and get in contact with them pre-emptively. Suggest a day/ time they might like to come round, and agree a date time with them, and stress to them no unannounced visits! I always try to organise a single day, maybe two, over the holidays to have all of our visitors as I find that one day with multiple visitors is easier for our girls (and us!) to handle than a few visitors over multiple days.  This year, we have invited people round for a Boxing Day leftover party, so by the end of the day on the 26th, we will have seen all family who are likely to want to come round.

3 – Have enough for everyone! Its bad enough when NT kids fight over things. Just imagine what its like for ASD kids with their very egocentric world-view and inability to grasp the world view of others. Wherever possible, try to make sure that there is at least 1 of everything available to avoid the inevitable screaming meltdowns when “sharing” is suggested.

4 – keep sensory stimulation to a minimum. Flashing lights, crackers, balloons, music, cooking smells, alcohol: Christmas can be overwhelming for the most well-balanced person. To someone with sensory issues, which come hand in hand with ASD, it really can be too much.  Try to tone this down where you can: static Christmas lights rather than flashing, or ones with a slow pulse, no decorations which play tunes or move.  My girls really don’t like loud noises, so crackers are a no-go (or at best, they have to wear their ear defenders when they pull them) and the fear of balloons popping causes hysteria, so they are right out. Involving the kids with some aspect of helping with the cooking can mitigate the dislike of the odours. Alcohol, I’d recommend holding until the evening when they are not around so that the very strong smell of alcohol (and over-the-top antics of the well-fuelled) don’t upset them.

5 – on Christmas day, give them the opportunity to be excited and open presents, but don’t give them everything at once – it can lead to sensory overload. Try to ensure they only open 1 or 2 gifts at a time and then enjoy those items before moving on to something else. But remember its still important to keep up the...

6 – ROUTINE! As much as possible, get dressed at the same time, eat breakfast at the same time, if you are toilet training, have your potty breaks at the same time.  Nothing makes ASD children more anxious than unpredictability.

7 – Distractions. A good rule of thumb is always have something to hand to distract them with should it look like they are finding it too much

Christmas should be exciting and fun, but there’s no reason it has to be too much for ASD children (and dads like me!) to enjoy with everyone else with a little bit of planning and forethought.

For anyone else reading this who is part of an extended ASD family, please take note of how much work we have to put into keeping calm on Christmas. This is why we don't come to your house, its why we ask you don't arrive unexpectedly, its why, no matter how well-meaning your offer of help is, we've got this covered.  If you really want to help, come when you say you will, bring what you say you will, leave when you say you will and support our decisions and routine.  This will help us keep meltdowns at bad, and ensure that we all have the best Christmas we can.




Sunday, 15 December 2013

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

Monday, 9 December 2013

Weathering the storm of unexpected change.


 I am furious!

Today, I was due to have surgery on my hand, a surgery which I had been preparing for since mid September, and been working through the details of since mid November.  Today, I got up at 5 a.m., as did wife and kids (well, actually, sometime between 5 and 6) to be at the hospital for 7. I had prepared myself mentally: go in early, get seen early, see consultant, see anaesthetist, go to theatre, general anaesthetic, surgery, wake up, go home. And to start with, it went according to plan.

Until the anaesthetist turned up, and decided he would rather do a local anaesthetic than a general, and spent time trying to pressure me into that. After 10 minutes of cajoling, I told him I had spent weeks preparing for general and I don't handle last minute changes of plan well. He could see I was getting upset, and agreed to do a general if that was feasible.

That shook me up some, and I started reading my book to try to calm down.  Just after 9, wife arrived, almost simultaneously with the returning anaesthetist, who tried to tell me as politely as possible that he was sorry but my surgery couldn't go ahead today, but the good news was that they had already booked another appointment for me in a different hospital.

So, to anyone reading this who knows about Asperger's  and has been following my blog, how well do you think I took that?  change of date, change of venue, sudden call off after an attempted change of plan on the day?

Safe to say the simplest description would be "not well".

I sat in silent shock, I cried, I stormed off, I came back and shouted, I stomped out of the building before coming back to try to find out when they had booked me for, and it turns out that they think the best time to operate is the day before my birthday (a day which has always been disastrous to me).

I was so angry! There's no way they can understand the amount of mental preparation I have put into this, not to mention discussions and agreements I have had at work - a job I only started the week before I found out I needed surgery - to ensure that they understood the need for this, and let me have the time off that I required.

And if the fact the surgery was cancelled wasn't bad enough, the reason for it was, put simply, that I'm too fat.

Seriously. I'm too fat to have surgery on my wrist and thumb.  Funny how that didn't come up in the hand clinic originally, or in the phone consultation when I gave them my details including my weight and height. No, I'm too fat today for the facilities at this particular hospital, and I'll need to have surgery at a different one.

So, to recap: the surgery was cancelled, on the day, at the last minute, when I was already in my surgical gown, wearing tags and with lines drawn all over my arm to indicate where incisions would be made.  The anaesthetist said I was too fat to have surgery and rebooked me to another hospital, closer to Christmas which has, by the way, already interfered with my Christmas plans.

Like I say - furious! It has taken me a good 3 hours to calm down to the point where I don't want to scream about this! This is exactly why we need services like ASQ to be able to collectively list experiences like this so service providers have something they can refer to and see examples of good/poor service and how it affects the ASD community.

So, now I have to prepare myself for surgery again, in 11 days, in a different hospital, at a different time, as well as come to terms with my weight - and let's face it, being told you are too fat for surgery, apparently because I would likely breather equipment, is something of a wake-up call!

Of course I can do it, but the level of stress this has given me today is just unreal. So much, in fact, o have decided to still have the day off work as I don't think I would have achieved anything in this frame of mind.

God bless the NHS.

Monday, 2 December 2013

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.