Adult Autism Family Workshop

I spoke at an Adult Autism Family Workshop run by Belfast Health and Social Care Trust yesterday morning on the theme of identity.

Below the line, you will find an introductory video, followed by my script and an audioboo (now split into three chunks) I recorded of me giving the talk.  Listening to one and reading the other will reveal how many apparent ad libs were anything but!

UPDATE:  as well as adding a couple of pictures, I’ve written up the rest of the day for Slugger O’Toole.


WARNING

to parents of young children

You may be fed up watching this

(the kids will be just fine)


Introduction

“Don’t let them in, don’t let them see
Be the good girl you always have to be
Conceal, don’t feel, don’t let them know.”

Good morning everyone!

My name is Andy Boal.

Frozen is about a lot of things.  When my wife and I first watched it, we saw two different things, and we were both right.

Jo saw the love Anna had for her sister Elsa and how she pursued her into her self-imposed exile.

I saw something else.  I saw Elsa coming to terms with her true identity as the Snow Queen and the terrible damage that having to hide it for the sake of everyone else, including Anna, even for the best of reasons, had done to her.

This talk is going to be on that theme – identity. What it means for me to be a person with Autistic Spectrum Disorder or Condition, but, as with many people at the high-functioning end of the spectrum, I still refer to Asperger Syndrome.  Being my own story, I will inevitably retread some of the ground Shirelle and Caroline covered before the break.

I should say that I am comfortable enough with the terms Asperger’s, Aspie, ASD and ASC to use them about myself almost interchangeably, and I’ll be doing that today. Not everyone is, and I apologise in advance if it upsets you.

Growing up

I’m a kid of the 70s and 80s, a time when the ZX81 was the bees knees (or at least it was a computer, much as I really wanted a Spectrum, or if I had a chance, a BBC Model B.)

EPSON MFP image

Andy with plastic meccano on a good rug for toy cars

I grew up in the middle of a pile of Lego, or rather I would have done if my parents hadn’t made me tidy up afterwards. Our living room when I was little had a rug with very convenient tracks within the pattern for playing with Matchbox cars and Lego cars – hiding under the plastic meccano crane in that shot, and in those long days when there were three channels and nothing on for a few hours a day (as opposed to now, with hundreds of channels and nothing on 24 hours a day) my parents discovered that their hyperactive little boy who exhausted them by going to bed late and getting up early each morning could be kept occupied for more than ten minutes at a time with Lego.  In fact, more than that – maybe even half an hour.

That was a big deal for my exhausted parents.

So Lego it was for me.  Meccano less so, but it was there too, until I gave it to my grandpa who would spend a lot of time tinkering with it.  After retiring from Shorts, he had a lot more time to give to repairing clocks and watches, and after I left school, he would take me with him when he was repairing Ballymena Town Hall clock and Bushmills Northern Bank clock (now a coffee shop).  He was almost certainly Aspie himself.

Lego has stuck with me all my life – so much so that in 2011, Jo wondered when the pile of Lego I was moving into her spare room was going to end. I’m not sure Jo realises just how much Lego is still at my parents’ house, in both my old bedroom and my shed, which also houses my music and Beano, Dandy and Whizzer and Chips annual collection.

Lego, music and comics. Three of my biggest interests to this day, and my memories of 40 years of weekly Beanos and other comics still inform discussions on websites like Comics UK, despite the horror of having had to throw out comics on a regular basis at my mum’s insistence.

With that sort of specialist interest, complete with a love for railways learned with the aid of the original Railway Series by Rev Wilfred Awdry (aka Thomas the Tank Engine), being the son of a church organist and music teacher at the local high school, having an English accent, having sensory issues affecting my diet and touch, being reasonably clever (hanging out at lunchtime with the other smart kids) and generally just different, it’s no surprise that I was bullied.  It was called teasing in those days, and while I enjoyed being in the Robins, I only survived a couple of months in the BB junior section as a result.

Unfortunately, the bullying has resulted in me having a rare understanding, not without a little help from others such as my wife and Orchardville’s Kyle Duncan, that overreaction to bullying – fighting back or just losing my temper and going into meltdown, and getting caught for example – can far too often leave the bullies getting off scot-free. My head of year at Regent once wrote that I had to learn to live in harmony with others, but that’s because he was so often dealing with the consequences – the symptoms.

I sometimes joke that had I been thirty years younger, I would probably have had a Statement of Special Educational Needs. I was academically gifted except for sheer inability to study – something I still haven’t learned to this day, and something that does hold me back – and inability to structure essays, something which I can only do now in the age of computers where I wrote the last line of this talk more or less straight after putting in the Frozen clip, and they certainly held me back at University where I failed most of final year and eventually graduated with a pass degree.  My A level French teacher, a brilliant man whose ability was not reflected in my D at A level, commented in my final school report that I needed to learn the conventions of formal written English – he died a year and a half ago after two strokes, but I think he would have been pleased to see some of my current writing, particularly for Slugger O’Toole.

What I was able to do in Maths class where I think I drove my teachers potty by always being a page ahead of everyone else, and intelligence and understanding not always reflected in exam results (I went from a C in GCSE Business Studies through scores in the 60s in A level economics to an A in my actual A level)  still left me with issues of what my current level of self-awareness tells me was ADHD, which is still reflected to this day in my ability to be distracted from the task at hand, even if I move 40 years more slowly than when my parents had me on reins to keep me under control, and 20 years more slowly than when my second girlfriend was trying to get me to slow down.  Jo would know the feeling – not about the reins, though, and she is well used to me retreating into my phone or upstairs onto my computer.

In the 1980s, autism was a kid with severe communication difficulties who was typically a savant. A brilliant artist, perhaps, and with my intellectual ability and hamfisted clumsiness, that wasn’t me!  Kids diagnosed with autism certainly weren’t to be found in mainstream schools.

I wrote to my GCSE Maths teacher, who like Jo and myself is a member of the Corrymeela Community, to see what the experience is like for kids with an ASC/ASD diagnosis in a grammar school in the 2010s, and here is what Marianne said:

Back in the day we just thought some kids were special/different/more self-contained.  There definitely were not as many ASD kids (in grammar schools) as there are now.  It was never a problem in Maths – they were usually pretty good at it: I suppose they had to be to have passed the transfer test. Also Maths didn’t involve discussion or group work so much then – and that probably worked in their favour. 

The ASD kids now have way more support and all teachers are aware of it and the implications.  We even have a quiet room for kids to go to at break/lunchtime if they can’t cope with the hordes in the canteen!!!

Ah, the difference over 25 years – that’s scary.  I’m 43.  The difference over 25 years, where those who either couldn’t cope with the hordes in the canteen or just didn’t fit tended to congregate in the library or in the music department.  Both were gathering places for misfits as well as the truly talented people around the Music Department.

Asperger’s wasn’t proposed as a diagnosis until the 1990s, by which time I was at University.

Relational difficulties would continue at work, although how much they happened was largely a function of how I was managed. I really flourished under some line managers, but others struggled with me and I with them, because I don’t fit into boxes.

Calvin and Hobbes comic strip 2 Mar 1991

Calvin and Hobbes comic strip 3 Feb 1991

Fitting into boxes.  Let’s pick that up for a minute.  Watch this.

Ah, the glory of Mr Bill Watterson’s work – and that punchline.  “Sometimes that’s the way things are!”

The other parallel, and it fits just about as badly as the Calvin and Hobbes cartoon, is the Matrix – and the red and blue pills.

Sometimes things just are the way they are.  And sometimes you wish that you could have a choice of pills, because being ASD can be compared to living on the red pill but never having the chance to choose the quiet life plugged into the Matrix that comes with the blue pill.

That black and white world I mentioned a minute ago doesn’t really reflect the reality for me of living with ASD, but it does reflect part of my communication difficulties.  I see a great many things in shades of grey and shades of colour, but when it comes to expressing my thoughts, it can come out in very black and white terms that don’t necessarily reflect how I’ve come to those conclusions.

I am now going to contradict what I’ve just said, because another factor is my problem solving ability.  How do you explain why a solution you’ve just proposed works when it’s driven by pure instinct and you have to start working backwards to find the shades of grey and colour that will test the idea to see if it’s workable?

It is therefore pretty difficult at times to prove my abilities and potential, because intellectual ability is not experience and thinking outside the box requires application. Only having a pass degree has held me back, and those black and white answers mean I interview poorly and so I haven’t advanced at work to a level which I feel reflects my potential.  On top of that, clumsiness meant that I wasn’t able to pass my driving test until I was 37, and it has also restricted my musical ability.  I run on musicianship, rather than actual skill, but there is an undoubted foundation in there. That was the only picture I have to hand of me playing keys, for an event up in Clonard.

But the good news for me is that I’ve had opportunities with people.  I was part of a team leading worship in my then church for about six years before becoming Musical Director in Strand Presbyterian church in East Belfast. I’m now musical director in Greenisland Presbyterian, and surrounded by a pile of support that recognises the difficulties I face – especially when I am misunderstood or don’t express myself the best way – people who have given me chances.

I’ve volunteered for Summer Madness for 22 years, doing a variety of responsible roles (and living that fine line between responsible adult and vulnerable adult!), and I’ve helped at other festivals as well.

My interest in trains has developed into a broader interest in transport issues, resulting in me making occasional TV and radio appearances (thanks to Roads expert Wesley Johnston), as well as writing for Slugger O’Toole on a range of subjects, and leading me to start exploring doing academic research into the cost to society of congestion and the impact of choosing to drive rather than use public transport on those who don’t have the luxury of choice because they need to drive to get about their business.

I was unlucky in love. I overinvested emotionally, and I particularly paid the price with one girlfriend who left me devastated and feeling frankly used at a time when I was very vulnerable for other reasons. My next two girlfriends, several years later and several years apart, were stories of recovery and discovery as I learned more about myself. Thanks to what I learned from being with them, I was finally fit to meet Joanne in August 2010, and marry her in February 2013. Her patience and love has been incredible, especially as she has walked with me through the whole diagnostic process, helping me, encouraging me and supporting me, and I live in wonder at that love, and pray that I will never abuse it. She also has friends and family who won’t be a bit slow to tell me if I step wrong.

Diagnosis

Going forward for diagnosis with Jenny Soule was the result of several things. I was having difficulties at work, and an ex had suggested I was on the spectrum, and as I learned more, I was able to say, yes, this sounds exactly like me.  Fortunately, my GP was supportive, but one of my friends wasn’t so lucky when she approached her GP in England recently.  You may be shocked by this reaction, and I apologise in advance.

So the doctor started ticking me off as soon as I came into her consultation room. Apparently I seemed unprepared, highly tense and spoke too quickly. She thinks I have a mental health problem rather than ASD, and would like me to get Talking Therapy before she can even start to think about any kind of diagnosis. It really didn’t help that she started the confrontation by being angry, tense and running 20 minutes late herself… She suggested getting involved in a local amateur dramatics club as a way of learning how to be myself – learn how to put on a mask and pretend to be neurotypical better, and thus be more able to fit into the world.

I was shocked.  I talk too fast.  I felt unprepared and I felt tense when I talked to the doctor and when I went to the Arches centre for assessment.  I’m sure many of you, when you either went for assessment yourself or went with your friend or family member felt pretty similar.

Libby told me yesterday morning when she saw another GP in the same practice that she has in fact been referred for assessment.  It’ll be a long journey, but that news did a lot to help her self-esteem.

On my own journey, I was worried. Did I hide it too well because I was an adult? Did my general tendency to do all right mean that I wouldn’t merit a diagnosis that requires “functional difficulty” – in other words, that there were tangible problems in daily living?

I also knew the damage and frustration that pretending to be “normal” had caused me.  How the lack of space to express myself in a safe way led ultimately to explosion when the pressure of inappropriate internalising had built up too much – just as Elsa was damaged by years of trying to be normal out of fear for her sister Anna.

You can imagine how nervous I was after the various interviews I had with Jenny, Autism Diagnostic Observation Schedule  and Wechsler Adult Intelligence Scale – a broad-based intelligence test often used as part of the diagnostic processs to help identify developmental weaknesses – when we went into the meeting room in the Arches Medical Centre, to face Jenny and Jayne Perkes, the team’s OT.

Kirsty Quigg, the team’s Social Worker asked me what changed between not knowing and knowing. What difference did it make?

The answer isn’t that straightforward.

But I think it comes down to two things.

The biggest thing was relief.

Relief that I had a name to describe my behaviour. An explanation, in fact.

Relief that I wasn’t imagining things, and that Jenny, Jayne and Bridie had seen through the façade to what lay beneath.

If I’m honest, relief that I would be able to get help at work, although it would take quite some time for me to see what I needed help with – that business of hiding things far too well, and not necessarily having the self-awareness required to understand it.

The other difference?  Determination.

I wanted people to understand that I would not always respond normally.

I wanted to be accepted for who I am, not who people want me to be.

I wanted to be safe to not always have to conform, within reason. Autism, a label that is being rehabilitated by being used as a term for the whole spectrum of relational and social communication difficulties is a term with which I am comfortable because I know what it doesn’t mean, and I want to be safe to live up to my identity – not just my identity as a Christian which underlies everything, but who I am as an Aspie.

That reminds me of the A word.  If you’ve been watching you’ll know the problems caused in the first episode when the psychologist used the word autism without unpacking the terminology.  It’s been interesting to watch the A word each week, and last night’s show with Maggie’s truth telling and her confrontation with Alison over her bullying of Maggie when they were children rang a few bells, but it leaves me wondering how Christopher Ecclestone got to be old enough to play a granddad!

I, in fact, we, all of us on the spectrum, can only be our true selves when we are allowed to be who we are and comfortable in our identity, just like Elsa.  I would even compare it to my gay friends when they come out, rather than feeling they have to pretend they are “normal” just to make everyone else happy.

I wanted to not be pigeonholed.  People know I’m a good listener, although stress reduces my capacity to empathise, and I want people to see that I don’t fit the stereotype of an Aspie, mainly because there is no such thing.

In a post-diagnostic group which Kirsty and Bernadette Doherty facilitated, I s3d plotaw loads of evidence that the Autism Spectrum isn’t so much a straightforward rainbow curve.  There were six of us, and each of us had a unique mixture of abilities and reduced abilities. A rainbow doesn’t even begin to describe the map of peaks and troughs that describes our different abilities – that graph on the screen gives you some sort of concept of how I see the spectrum.  A grid of things like how we do, look at, and think about things, and the third dimension showing a collection of peaks and troughs that’s very different for each one of us.  Something that can’t be cured, and even if it could be cured, I wouldn’t want to lose it – and nor do I think my friends would want it to be cured either – because with it would go other parts of me that are what I uniquely offer to the world.

Nor is it remotely as easy for everyone as it has been for me to come to terms with the diagnosis, and I’ve seen that in the post-diagnostic group.

But what I really want, my real determination, is for people to see past the oddities, the failures to comply with societal norms, the help that I need with what is either difficult or impossible for me, to see what I can do.

To see what all of us Aspies can do.

To see how our different perspectives on life from the norm make a real difference to decision making, how we see things that others don’t – something of intrinsic value to an employer, identified by agencies such as Specialisterne who exist to match Aspies and others on the spectrum with jobs which quite literally pay for their abilities.

To see what our insight into any specialist interest we have offers to the rest of the world.

To see that, in the end, and no matter what our difficulties are, this one thing.

We are worth it.

Conclusion

My name is Andy Boal.

I am many things.  I am a musician, a Christian, a husband, a son, a friend, a blogger, a Lego fiend. I am many other things besides.

Somewhere in the middle of all that I have Autism Spectrum Condition or Disorder.  It’s part of what and who I am, but it can never define me.

Sometimes having Autistic Spectrum Disorder gets in the way of being who I truly am, because people can’t see past it.

Sometimes having Autistic Spectrum Disorder is the only way I can express who I truly am.

Thank you very much.

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