On the MIGDAS and other stories

My daughter has had her autism assessment, the only thing left is for her to fill in a form called the MIGDAS. Despite being only 16 the assessor wants her to do the adult version as she’s clever and shows good levels of self-awareness. But it’s 28 pages long and we’ve been away and her boyfriend came to stay, so here we are in August and it’s still not done. So no outcome yet.

We went on ‘holiday’ to London. So not a relaxing break by any stretch of the imagination. I sobbed my heart out in a cafe just off Leicester Square on the first day and nearly had an meltdown on Greenwich High Street on the last.

We went because my son had wanted to see a play at the Globe Theatre for his 18th birthday. But we all caught norovirus and had to cancel. Norovirus is infinitely better than London. What was going to be a one night stay in March turned into a 4-night stay in July. With hindsight I shouldn’t have been so delighted to be vomiting on my son’s birthday. Incidentally I have really quite bad emetophobia and am useless around vomiting people – so much so that it’s my husband’s job to look after the kids when they are sick, other illnesses I’m fine and will stay awake all night if need be, but that is too much. I could never work as a doctor, nurse, paramedic, etc. Even as a seriously depressed teenager with a penchant for drowning my sorrows with alcohol I would always not go too far because of my emetophobia. And yes, anecdotally, it seems to be quite common among autistic people.

The autism assessment went on for hours. My daughter had a one-to-one without me that lasted about an hour and on the previous day I had a one-to-one about her (but not with her) that lasted about 2.5 hours. I found it really hard, a lot of the questions were asking about how well does my daughter pick up my non-verbal cues. To which I’m like: I don’t know – I don’t even know what non-verbal cues I should be sending her that she’s not picking up. Lots of the questions assumed that the parent didn’t have any autistic traits themselves. Fortunately I was able to think of instances where my husband struggles in his interactions with her (and me to be honest) because of our communication difficulties.

And the boyfriend – in an autistic cliche, my daughter met him online (although they have a mutual real life friend).

Crisis of confidence and impending autism assessment

No, not mine. My daughter’s.

The date for my daughter’s autism assessment has finally come through and it’s next week.

I’m dreading it.

What if it’s not autism? What if it’s just bad parenting? What if I’m really a refrigerator mother?

My daughter’s first CAMHS clinician seemed to think her problems were “family of origin” issues. Maybe she was right.

I’m stressed out. Massively. I’ve started to get cluster headaches – stabbing pains around my left eye that are utterly unbearable but leave as quickly as they go. Migraines and other headaches such as cluster headaches are associated with autism.

Reflections – 18 months on

It’s now been 18 months since I realised that I was probably autistic and only a little less time since my GP agreed with me that in all likelihood that was the reason for my emotional difficulties and referred me for an NHS diagnosis. The wheels turn slowly with the UK’s over-stretched health service and I have been warned that I might be waiting another 4 years before my assessment. The waiting time is far from ideal, but for myself at least I feel that the damage has already been done and a five year wait is nothing. This is not the case for my children: my daughter is having a private assessment straight after her GCSE exams and my son, who is 18, through talking to his best friend (a diagnosed autistic) has realised that he has both autistic and ADHD traits – the one masking the other and is planning to spring this new-found revelation on his new university in the autumn.

My husband remarked earlier this month how much better my mental health has been since I realised I had autism. Which isn’t to say I’ve been emotionally healthy throughout the past year and a half: I’ve had panic attacks, one massive autistic meltdown and a couple of incidents where I self-harmed, but I haven’t suffered my annual depressive episode and my mind isn’t constantly plagued with thoughts of how hopeless my life is and how impossible it is for me to be less unlikeable. I’m finally at peace with who I am and I’ve realised, as my many therapists would try to tell me, that it’s OK to accept myself as I am.

I do believe that a lack of either an autism diagnosis or an acknowledgement from a medical professional (and I’ve seen many over the years) that autism was even a possibility played a huge part in prolonging my emotional pain. When all around you, you see evidence that you are not accepted by your peers despite all your best efforts, a clinician’s claim that you just need to “accept yourself” is going to sound hollow. As people love to point out to others in comment threads online: “You’re the common denominator in your life.” If everyone you meet seems to have a problem with you sooner or later, maybe you really are a terrible person and if you can’t find a way to not be a terrible person …

This appears to be a common experience; that undiagnosed autistics suffer for decades with recurrent depression and/or anxiety disorders. Some people want their lives back, so they can grow up knowing they’re autistic. I understand that, but I’m kind of OK with how things have turned out. Would I have been even more reclusive than I currently am if I knew I was autistic from childhood, would I have married my husband, would I have had children even? While it’s nice to imagine that my life would have been better if I hadn’t spent the last thirty years suffering from recurrent depression, it actually might not have. Certainly it has made me more empathic and sensitive to the suffering of others. I could have ended up a massive jerk/cow/bitch.

But it doesn’t follow that I think it’s a good idea for every young autistic person to wait as long as I did.

Female Friendships and Autism

**This post comes with a trigger warning for suicidal ideation.**

I could have made this gender non-specific and blogged about friendship in general. However, the issue is that being a woman who, in the words of Elle Woods “is not completely unfortunate looking” male-female friendship is sometimes complicated. Let’s put it this way – I have more gay friends than straight male friends. Oh don’t get me wrong, I have plenty of male acquaintances but they’re not people I could or would want to confide in. Besides, they are all keeping a respectful distance.

So for friends I’m pretty much limited to other women. But I don’t understand neurotypical women at all. I really struggle to relate to them and I don’t have any idea how to befriend them.

When I worked at the same firm as my husband, he once had a conversation with a male colleague about me. The other guy mentioned something about “Kate and all her female friends” and my husband who had (probably unknowingly) been my best friend for a year or two by that point, pointed out that he couldn’t tell who my friends were, that I seemed pleasant enough with the other women I worked with and that they were all polite enough in response, but as far as he could tell I never spent time with them outside of work. My husband told the other man that I didn’t seem to have any friends.

The only “hen do” I have ever been to was my own, a meal after work with some colleagues – organised by my bridesmaid as I didn’t dare try to organise one, assuming that no one would come.

There’s more, but I’m starting to cry now so I’ll stop here.

For a very, very long time I internalised events like these as proof of my own unlikeability. That I was burden to everyone around me and should hurry up and off myself. But it’s not true. Not really. I did have colleagues who came to my last minute “hen do”. They did try to befriend me. If anything, all this is proof of my autism.

My younger brother identifies as an Aspie – when I told him I had figured out that I have autism he had his own lightbulb moment. He has some anxiety that he masks really well, but overall he has pretty good health – mental and physical. It helps that he’s a computer programmer who works with lots of men that aren’t going to be weird with him because he’s the gender they’re attracted to. He doesn’t have to discuss his emotions to make friends. He has many more friends than I do. He always has.

Doing a “values-based integration process” – Unmasking part 1

I’m reading through Devon Price’s Unmasking Autism: The Power of Embracing Our Hidden Neurodiversity. I haven’t got very far. I’m stuck on page 14, which is the last page of the introduction.

There’s this table, right. And you have to fill in five moments from your life when you felt you were FULLY ALIVE (all caps appear in the original lest you want to yell at me for shouting). Fortunately Devon tells us that this task might take weeks, which is handy because I am indeed taking weeks over it. So far I’ve got two, neither of which I feel comfortable sharing on a public blog.

Which is weird, because I can tell you right now that the entirety of my primary school class would guess the first moment and the entirety of my secondary school year would guess the second moment. So it’s not like my happiest memories are unknown to other people. I’ve just kind of squashed everything down, all my feelings and thoughts and emotions about the things that give me most joy – which is what the book is about. How autistic people mask themselves by making themselves smaller and quieter to be more socially acceptable and then forget how to be themselves or even if they do remember they are afraid to admit their personal values, their hopes and dreams and aspirations out loud for fear of what others might do or say.

To a certain extent everyone masks. The way someone behaves at work or meeting the Queen is not the way they behave at home when no one is watching. The issue for autistics is not with showing other people politeness and respect but with turning ourselves into bland shells of the people we used to be. And that’s hugely damaging to our self-esteem. We deny parts of ourselves in the hope of being liked and accepted (and dare I say loved) and because we’re not being our fullest, quirkiest selves we stop being authentic. And then when we are rejected by others is that because we seemed inauthentic to them, or because they didn’t like the toned-down version of ourselves that we let them see? Would they have liked us more if we had just been ourselves? But of course, we started masking for a reason. Because other people let it be known that they didn’t accept our autistic selves and that we needed to be more like them, more neurotypical.

Clumsiness

I was always the last to be picked in PE class. No one wanted me on their netball team. Not if they could help it.

Kate can’t catch a ball.

I also fall over. A lot. I have new glasses. The last ones had to be replaced after a literal faceplant while out for a run on the country lanes near my home. I tripped and grazed my cheek on the tarmac road and bent my previous specs so badly they could no longer stay on my face. Luckily no cars were around.

I’ve lost count of the number times I’ve sprained my ankles.

I am not allowed to carry the shopping from or to the car, because my ability to trip over my own feet in the car park has resulted in too many food items being scattered across the ground.

As a child, my teachers were worried that I was a battered child because my legs were always covered in bruises because I was always walking into things.

I always had grazed knees at primary school.

I chipped the corner of one my central incisors when I walked into a tree aged 16.

I am a walking liability.

As a child I used to toe-walk.

As a toddler I never crawled. I’m told I pulled myself up and began cruising around the furniture instead. Neither of my children ever crawled either, but I didn’t worry about it, because that’s normal, right?

Clumsiness is associated with autism. It’s not actually part of the DSM definition, but appears to be pretty much universal.

The autistic spectrum doesn’t mean what you think it does

Here’s a colour-wheel showing one way of representing the autistic spectrum as it refers to me:

The further out the colours go the more problematic/severe those traits are. (Now it would be nice to see some positive things here, but no matter.)

That is what my profile looks like. Note that this was formed using a few, very specific questions that IDRlabs.com asked – I’m fairly sure anyone who viewed my Spotify listening habits would be surprised that my Fixations are so low – but then they only asked about how obsessed am I with numbers (not really, my daughter gets obsessed with numbers and has memorised pi to about 70-80 digits before she got bored of that and got obsessed with Marvel instead). If my daughter did one it would be different. Every autistic person has a different spectral “fingerprint”. For the star nerds among you, yes autists are just like stars – I prefer to think of myself as an O. Rare and special.

Some of the traits I was born with and some have been caused by the environment I have to live in. For example, the depression and anxiety parts aren’t even directly caused by autism, but as a side effect of trying to cope with living in a world that views me as a problematic individual that just has to try harder.

My seemingly “good” poor eye contact score is misleading. I work hard to “fake” normal eye contact and have done since childhood – I had some particularly bullying teachers who forced me into training myself to fake it. My natural eye contact is either not looking at you at all or staring at you like a serial killer. I am not naturally capable of “acting normal”. In fact, I try so hard to look normal that I have little brain power to spare to actually interact with the conversation. I’m trying so hard to behave in a neurotypical fashion that I am literally not listening to a word you’re saying. I’m guessing this probably annoys people a lot. But if I hadn’t to learn to mask so well, I would probably have been beaten (corporal punishment not being outlawed in secondary schools like mine until 1999).

Now teachers these days have wised up that demanding students make eye contact is ableist and bullying, so my daughter’s eye contact is much, much “worse” than mine. But at least she is listening to you. Whereas I can only pretend to listen to you.

And can I digress and say that this is what really, really annoys me about things like ABA – it’s all about the outward appearance, the child fakes natural eye contact so it must work, but if these children are anything like me, normal eye contact will never become an unconscious act – it requires deliberate brain power to remember to act the way you want me to.

Does my colour wheel spectrum surprise you?

I have often heard people say things like, “Aren’t we all somewhere on the autism spectrum?” And I recently attended some EDI training where the instructor talked about a “severely autistic” person who was doing a university degree. Now perhaps this instructor was indeed talking about someone with level 3 autism. But, by its very definition, a person with level 3 autism requires 24/7 supervision? Perhaps I am being too harsh on my fellow autists and such people are indeed capable of tertiary education and all that entails.

Or perhaps she, like many people, thought of the spectrum as linear. With neurotypicals at one end and Rain Man at the other end.

You should know, by the way, that since Dustin Hoffman talks in Rain Man, these days the character would probably be considered a “high-functioning” (another term I hate) autist who had wrongly been institutionalised (because yes that was thing).

Why don’t people realise they’re autistic? On concrete thinking, the double empathy problem and other matters.

Before I realised I had high levels of autistic traits I used to read articles about women who didn’t know they had autism and never for one minute considered that the authors might be referring to me.

As my husband said when I finally realised that I might be autistic and aced the AQ-50 test I took to check:

“You can’t possibly be autistic, you have empathy.”

This one has been done to death elsewhere, but just in case you’re hearing it for the first time. No autism =/= sociopathy. Some autistic people have “normal” empathy, some (including me) have alexithymia – so we don’t even know what our own emotions are, how can we know what you’re feeling, please tell us. The part of empathy I struggle with is cognitive empathy, which means I don’t know what to do with myself to make you feel better when you’re upset. I probably have come across very badly and as insensitive to upset people in the past. But I’m getting better at doing what the “world” expects of me as I age because cognitive empathy can be learnt. Remember, autism is a neurodevelopmental condition and some stuff that neurotypicals find easy is hard for me (and vice versa actually).

By the way, psychopaths do not lack cognitive empathy. In fact they tend to be excellent at reading people and have very high cognitive empathy that they are only too happy to use against you. Autism isn’t psychopathy-lite, they’re completely unrelated conditions caused by different “differences” in the brain.

Now, the funny thing is, it’s not just autistic people who have an empathy problem. When autistics interact with neurotypicals, sometimes we’re not treated with empathy (let’s start with bullying shall we…). The science is suggesting ever more strongly that the empathy gap goes both ways and there is in fact a double empathy problem. Imagine every neurotypical child speaks a language (let’s call it Klingon), but every autistic child is fluent in another language (let’s call it English). Because only 1 in every 50 people is autistic, the dominant language around the world is Klingon. In a bid to fit in every autistic child tries to learn Klingon to be accepted, but neurotypicals don’t bother to learn English because everyone speaks Klingon.

“OK where are you going with this, Kate. I thought we were going to talk about why don’t people realise they have autism?” I don’t hear you cry.

Every autistic person with even an ounce of self-awareness has spent their whole lives trying to learn Klingon fluently if only to not be bullied. We grow up believing that we’re defective and broken. The mental health of the average autist is awful – but it’s now being recognised that there are high rates of undiagnosed autism in those who complete their own suicide as well as those who have anorexia and other eating disorders.

We see all these psychologists, and psychiatrists, clinicians and therapists and locum GP after locum GP and not one says, “Have you ever been assessed for autism?”

So we’re left to work it out on our own.

Only media autism doesn’t look anything like real-autism. Like my life.

Besides we’re concrete thinkers.

I’m not Rain Man so I can’t have autism.

I’m not a boy-genius so I can’t have Asperger’s.

And all the definitions of the traits are written by neurotypicals. Very rarely do these traits get put into language that I can relate to and go “yes, I do that too.”

Executive Functioning

I’ve always had really, really poor executive functioning.

My editorial clients don’t realise because I always get their work done by the deadline and (like most autistics) I’m really conscientious. So it looks like I have excellent time management skills and organisational skills.

But I don’t. It’s an illusion I can maintain so I can have a job. That and years of experience of working as a publishing freelancer.

Transfer me to another environment and the wheels fall off.

When I tried secondary school teaching I couldn’t keep on top of the lesson planning. What lessons I did try to teach didn’t work because my timings were always wrong and I hadn’t worked out how best to organise students doing practical work. (I still don’t know.) And while it was bad at work, it was even worse at home. I could no longer remember to pay my credit card bill on time. My husband had to take on all of the household jobs I normally did. All of them! And I went back to being 13 again. It was awful. And I wasn’t even trying to teach a full courseload. There was no way I was going to be able to cut it as a school teacher without having a nervous breakdown. I simply didn’t have enough executive functioning to cope with the demands of the job.

Autistic people don’t tend to have good executive functioning.

At school I was always the slowest in the school during cookery class. I would follow each step in the recipe rigidly. Never once realising that the other (neurotypical) members of my class were not being so literal and were multi-tasking. I hated cookery, the teacher would always laugh me in front of the rest of the class (with hindsight it felt like bullying). I didn’t like her much either. (Sorry, I digress again…)

And it’s not just me.

My daughter cannot keep her room tidy. It’s so bad I won’t even go in there. I’m not joking, it’s usually literally knee-deep with who knows what. I have no idea how she’s going to cope at university. I wish she didn’t want to go. Just thinking about her having to cope with all that terrifies me. I fear that no one’s going to want to share with her. I’m afraid she’s going to end up lonely and alone, just like me.

Parental aspirations and Classics

There’s a saying that children live out their parents’ aspirations. Sometimes that’s really obvious, because little Jilly has a pushy parent who put her on the stage at 3. But sometimes it’s more about parents and children just being similar.

I did Physics, that’s obvious. But I very nearly did a degree in Classics instead. In fact, I tossed a coin over the decision. That and the fact that with my background I knew nobody who got a degree, let alone something as clearly not-vocational as Classics persuaded me. So, despite the fact that I had studied Latin for 5 years and adored it, and got top marks in my exams, I stopped it in sixth-form so I could take A level Chemistry instead. And I took GCSE Statistics rather than AS Ancient Greek.

My oldest friend (and probably fellow Aspie) was much more sensible.

When I studied my master’s in astronomy I suddenly remembered that of course the old books (e.g. Isaac Newton’s Principia) were written in Latin or Greek and that actually, if I wanted, there was a possibility of me using my rusty Latin and Koine Greek (I took a distance-learning university course years ago for that one) to research one of the “greats” of history of astronomy. I might even be able to persuade someone to let me do a PhD in it.

By the way, there is another aspect to this. All of the astronomers before Newton were practising astrologers. I know! I said it, the dirty word, that no real astronomer can mention. But it’s true. This means that something funny is going on. Half the material that was churned out by the “greats” is ignored because it’s on the wrong side of the great astrology/astronomy divide. And if Galileo, Kepler, Brahe, et al. thought it important, then it would be very silly of me to think myself so much better than them and dismiss half their corpus out of intellectual pride. Anyway, as usual I digress.

I’ve long bemoaned my juvenile decision to drop Classics – although now with the benefit of hindsight and a fairly recently found desire to study history of astronomy texts in their original Latin, this looks actually quite helpful. I am currently revising my Latin knowledge with my old textbooks, the Ecce Romani series, and intend to advance onto A level material later this year. There are Latin textbooks and grammars all over the house.

My son has long been interested in myths and originally considered aiming for a career in computer games programming and design. He’s still considering that as an option, but games design is the sort of job where there are no fixed education paths you have to follow. So, he has recently decided to study Classical Studies at university and take as many myth courses as they’ll let him (he’s not as keen on the language side); hence there is a very strange sense of me watching him living out my dreams. But then he’s grown up in a family where deciding to do Classics at university would not be questioned as it might in other homes. Given the amount of flak I took for pursuing a Physics degree over hairdressing from some family members (how dare I have ideas above my station, don’t I know I’m only working class), I’m quite sure I would have faced a barrage of abuse if I had made the same choice. My son is also not entirely neurotypical. In fact he had some very obvious auditory sensitivities from infancy (I couldn’t use the vacuum cleaner in his presence without him screaming). Now I look back and go, well of course. But I just accepted it thoughtlessly at the time… Anyway the fact that autistic children are often classical myth nerds is widely known in the SEN community. AGAIN, WHY DID NOBODY TELL ME THIS!