I Am Autistic: My Path From Long Denial of Autism To Acceptance, part one

There. I've said it. I am autistic.

My previous blog post covered all that, a public statement, a very real coming out about my autistic brain. If you haven't read it and wish to, the link is under these words.  The first post provides some context to this one.

But how did I come to realise and accept this? How did my fifteen year rejection of an idea become acceptance of a truth? How did I come to be thankful for a truth that I could never properly consider before?

There were reasons why I kept steadfastly rejecting the idea, why I could not even begin to conceive that I could actually be autistic. I'd been able to joke about it – the joke came up too frequently, whenever I was over-literal in interpreting language, whenever I strongly exhibited any trait that would stereotypically fit an autistic pattern. But I couldn't take it seriously.

I couldn't deal with the idea until I'd dealt with gender issues and found some control, balance, happiness and hope in my life. While still indulging in self-rejection and self-hatred, while still seeing myself as a monster (or “abomination” as I thought the Bible said) I couldn't possibly have looked closely at the idea of autism.

I couldn't deal with the idea until my mother died. Unconsciously I believed in some way that I'd never hear the end of it if I took autism seriously. She would say “I told you so. Because I understand perfectly.” And she would say it too often for me to cope with. Of course, she might never have said things like that at all. But unconsciously I believed that she would and so could not face the idea.

And I couldn't deal with the idea because, in honesty, I didn't know enough about autism. Most of what I “knew” was based on stereotypes of very troubled children, very unruly or very silent or both. And I wasn't like that. I wasn't unruly as a child. I got on and did the school work without rebellion. And I wasn't more silent than others, at least not abnormally so. I didn't cope well through childhood and had lots of issues but I wasn't like that, was I? I wasn't like those children in lurid TV documentaries. So I couldn't possibly be autistic could I? Asperger Syndrome was a silly idea, it just couldn't apply.

The only adult, openly autistic people I'd spent time around didn't help me either. They may not have been like those children but they treated their autism as a guaranteed reason why they couldn't and wouldn't amount to anything in life. They said things like “My brain is deformed so there is no place for me in society, I can never be accepted.” They were without hope of a future which is a deep shame and a deeper shame when I consider just how intelligent they were and how much they had within them of wondrous quality. When the only autistic adults you know repeatedly say things like that then it's impossible to conceive that you too may be autistic, impossible to conceive that things may be just as hopeless for you.

Of course, now I firmly believe that these people were wrong. Not through their own fault but because of whatever had been told to them repeatedly as they grew up. It's so sad to know that there are people who, because of their autism, have been told that they are deformed, useless, of no value, and have come to believe it so strongly that nothing anyone else says can get through.

So for all the years of having this autism, Asperger Syndrome idea dancing in my head over and over again it was completely impossible for me to consider that it might actually be true rather than me just having a few coincidental similarities, sharing a trait or three. And I could explain those traits away. After all, as I told myself – entirely erroneously – isn't everyone somewhere on the autism spectrum? (No, most people are nowhere on the spectrum. There's my ignorance on display again.) So if I saw similarities it meant nothing. Nothing at all. Final verdict. End. Of. Story.

My perfectly held logical theories about my brain being nicely neurotypical began to fall apart only when I met other adult autistic people who didn't feel the same way as those I had met before. It was almost as if the universe knew I was ready for revelation and so began to throw autistic people at me. These were autistic people getting on with life, not letting their autism diagnosis get in the way of living. These are people with determination, people who believe in themselves and in their abilities. Yes, their autism can be challenging. Sometimes it can be very challenging indeed. But sometimes it can be helpful too. These are people who accept that their autism has helped to make them who they are and that in many ways they are better people for having autism, despite the challenges and struggles they have faced and still face in dealing with it.

These people, thrown at me by the universe, have changed my life. They didn't mean to do it but things cannot go back to how they were. I began talking with them about autism. About how it felt to be autistic – if “felt” is the right word. About their experiences. About symptoms. About expressing symptoms and about hiding those symptoms. I fully expected that taking to these people would kill the joke in my life. I'd be able to turn round and say that I was nothing like that. No, not me. I'm not like them. It's amazing just how defensive a person can be against an idea.

Things didn't work out that way. Rather, talking with these people began to confirm that the joke should be taken seriously. Very seriously indeed. I don't want to say much about the people I talked with. They should remain anonymous as I haven't got permission to write about them and reveal any specific information. So I'll say as little as possible. And the language will be gender neutral. Sorry if that language confuses anyone. They know who they are and some who are close to me know who they are and will know who I'm talking about in the next paragraph.

Very recently I've had long talks on autism with one particular friend. One of those autistic people the universe threw at me. It's a completely unexpected friendship for which I am utterly grateful in so many ways. On one day, having already spent much time talking – it was the sort of day when a drink in a café stretches to many hours – they decided to reveal their autism to me. Not that they are autistic. I knew that already. And having talked quite a bit I knew some of the theory of what that meant. But on that day they decided to BE autistic around me, to show the reality, rather than doing their best through hard effort to fit into a convenient neurotypical pattern for my sake.

So we sat in a café and my friend goes from being the person they had until that moment presented to me, drops many of the walls and ways of presentation, and appears before me as themself. Gosh, convincing a word processor that “themself” is a word is difficult. They were nervous about it but believed and hoped that I'd understand. That nervousness was normal – I won't say how they behaved in front of me (nothing immoral or outrageous or loud) but it wasn't the way most polite English people would behave in a café when with someone they don't know well.

Their belief, their hope was right. I understood. To be honest I felt very privileged to be seeing a reality that not everyone gets to see. I felt very blessed to have been trusted enough by my friend that they let me see at least some of what their inner life is like and what their manner of being can be like when not trying to fit in to what we are told is normal.

They told me they had thought I might understand. My response was that there was nothing to understand. They had acted much as I might wish to act if I didn't feel so guilty about it. It seems I find them and other autistic friends pretty easy to understand. It's everyone else I find difficult. It turns out that how they are is just the way life already is for me underneath all my own defences and attempts to fit in. I am told that this understanding of one set of people and difficulty understanding another says a lot about me.

My friend told me that they had decided that I am autistic. They weren't the first. Another friend told me they had spotted it on a first meeting. I find I trust my friends. They are intelligent. They have wisdom. And, crucially, they have personal experience.

Everything in my new friendships pointed in only one direction. Never before had it been a direction I'd been willing to look in but I like these friends. I respect and admire them for who they are, what they do and the challenges they give themselves in being the best they can be. Because of their manner of being I could accept that what was true for them – and what they recognised in me – might be truth for me after all.

I'd taken the journey from a belief in the impossibility of something to a belief in the possibility of something – and, grudgingly, the probability of something. But I had to know. I couldn't be satisfied with a “might”. I needed confirmation. Or denial – though by that time I knew that confirmation was the more likely outcome.

It was time to consider things very carefully. Very carefully indeed. To stop joking and get serious. OK. I might be autistic. I am told there is a good chance that I am. It was time to research and find out for myself.

A Post About Autism in the Life of a Woman Reborn

Throughout my adult life my mother worked to an assumption, a belief that could not be shifted.

She believed, wholeheartedly, that she understood me thoroughly. And that affected the way she acted towards me.

I have had a long history of mental health issues and I have spent my life not quite coping with that life in general, with relationships; with others and with myself. My mother would say to me very frequently, “You think that because you ...” or “You're doing that because you ...” Bless her, she was trying her best. But in the majority of cases I could only disagree with her conclusions. Her words to me showed consistently that she didn't understand me or the way my mind worked at all. She could not have understood me in any case – for I was, to all appearances, her neurotypical son.

And she had another habit, arising from my mental health history and a history of not feeling physically great without developing any obvious serious diseases. She would give me diagnoses. Many diagnoses of physical ailments and mental health conditions that would explain what she thought was wrong with me. A new diagnosis would crop up with alarming regularity depending what she had been reading or what someone on Radio Four had talked about that week.

All of my mother's possible diagnoses for me failed. All of them sank into the background and were quickly forgotten about. Or they were knocked out of their place by the next diagnosis.

All of them were wrong. Obviously and demonstrably wrong.

Except for one of them.

Probably fifteen years ago my mother came up with a new diagnosis. She had been doing some reading, following another health issue being discussed on Radio Four.

And I have spent these fifteen years having to deny that diagnosis. Reject it. Swear that there was no possible way that it could be the truth. Mother, you got it wrong again. Very wrong.

Fifteen years ago my mother diagnosed me with Asperger Syndrome.

I rejected that – just like I rejected every other one of her diagnoses. And yet it stuck. And stuck. And persisted. It just would not go away.

Too many things fitted. And later I aced the test available at that time to lowly lay people – the Autism Quotient test devised by Simon Baron-Cohen. There were other clues too that added into the pattern.

But I still rejected it. I could not be autistic in any way. Impossible. And, psychologically I couldn't accept the possibility that my mother was right in a diagnosis, even if that only meant accepting that she had struck lucky on one occasion. Perhaps, sadly, I am only able to deal with this now that she has gone. Most certainly I am only able to deal with this now that I've dealt with my gender issues, accepting and embracing myself as a woman.

There has been a joke about me in my family for years. The joke, which really isn't funny, is that I speak in certain ways, think in certain ways, act in certain ways because I haven't got Aspergers. I am who I am because I am NOT an Aspie.

I couldn't be. No. No. No. There was no way and I refused to look further into the matter. Except it kept popping up and there was no way to escape it for very long.

A great deal has happened recently. I've had to do a great deal of rethinking of my life and of my mind, my brain. There have been many revelations. Discoveries about myself. Discoveries about how I've used logical rules and brute force to suppress and reject things about who I am. Discoveries about just how much guilt and shame I've felt about these things that led, in part, to me building impregnable defences so the truth couldn't leak out.

A great deal has happened. I will be writing about it. I need to write many things in order to understand it properly for myself. And I need to write many things to explain quite how these things happened and how I can be so sure of my conclusions. But for today the writing needs only set out one basic fact of my being.

A great deal has happened: It's a process that has led from me rejecting any suggestion of Asperger Syndrome, any possibility that I am somewhere on the Autism Spectrum, to being one-hundred percent certain in my own mind that I am autistic. I. AM. AUTISTIC.

I've been having to come to terms with a lot. I've been having to strike down those defences. I've been having to start to learn to be who I am.

In a very real sense, for the second time in two years, I have had to come out to myself.

This accelerating process is proving to be very difficult for me at times. And combining it with suddenly having a very different set of hormones within me (As of a month ago I have been taking a testosterone blocker and increased oestrogen) is adding to those difficulties. There have been some awful days. And those around me have been subject to those awful days. At some point I will be writing about those awful days.

Realising this autistic truth about myself is not in itself a solution to anything. But it is a map, an explanation, a guide to why I am as I am. And that's a good starting point for gaining a better life.

It doesn't necessarily change as much as my revelations about my gender. But it's so much harder to deal with. All the gender revelations brought only joy, release, relief and understanding of much of my past. Coming out as transgender and living as myself, female, is pretty easy in comparison to coming out as autistic and having to work through so many things that are painful and have no easy solutions or simple solutions and sometimes, or often, will have no solutions at all beyond accepting them as part of who I am and getting on with life accordingly, without the old shame and guilt.

So, now I sit, impatiently.

I have been referred by the GP for a proper assessment for autism. I went to her prepared. I knew that asking to be referred for assessment would lead to the question “Why do you want to be referred?” So I took along lots of reasons, several pages of reasons to cover the very basics. I hadn't got a quarter of the way through when she cut me off and said “Yes, we'd better refer you.”

This referral may take a while, a long while, because like so many parts of the NHS, especially mental health services, there is a shortage of cash, a shortage of staff and a shortage of facilities. I crave the day the assessment begins or takes place. I can only hope the experts agree with me, and agree with autistic friends of mine, that this is the truth.

This is the truth:

I am autistic.

This is my coming out to the world. It may be premature since I am not officially diagnosed – not that official opinion will affect what is already truth. This is me. Coming out. En masse. Coming out as transgender was such a slow, adrenaline fuelled, tiring, terrifying thing. If I could do it again I'd get it over quickly. So here's a new coming out. To everyone at once.

I. Am. Autistic.

When School Government Targets Become More Important Than a Child. A Moan.

The school secretary just rang me.  Our child is at school, ill, needing to come home.  We only sent them in today knowing they could come home if too poorly to get through the day.  But the school wouldn't authorise child coming home ill because, through recent illnesses, they have just fallen below the government target attendance level.

So I just had a big argument with the secretary.  Child will now have a note allowing them to come home but "it won't be authorised".  Unfortunately I have to go out very soon so while I could in theory collect them I wouldn't be able to bring them home except via a two hour trip to town where they would just have to sit, very bored in an unfamiliar environment while I am at a music rehearsal.  Crap.  It's authorised by me.  Me, who saw how physically naff they were last night and this morning but who sent them to school anyway to try to do their best.  They're not well, but sometimes the body can surprise and provide strength to get through the day anyway.

Personally I don't give a monkeys about government targets - and since child is nearly top of the class in most subjects being off obviously isn't doing them much harm.  When a 14 year old gets A* GCSE level in science tests I'm not going to be too worried about their academic chances.  When they get Italian grades that shouldn't even be possible to get then I'm not stressed about them "failing".

I wouldn't be worried about academic chances either except that those bits of paper are usually quite useful later.  Happiness and authenticity trump any academic piece of paper.

Unfortunately the school secretary went on about the school having to meet the targets.  Don't want to send child home because the school needs to hit targets.  The secretary seems far more worried about a target than about child.  When government targets trump the well being of a child then those targets need to be abolished.  Immediately.  And when school staff are more worried about a target than about a child then the staff deserve to be sacked.  THE CHILD COMES FIRST.  Not the Department of Education.  Not the David Cameron idea of how things should be.  Not a target that might change after another election.

Yep, I'm one of those very annoying parents who is on the side of the child.  I'm not on the side of the school.  I'm definitely not on the side of the government.  I am on the side of the child, the person who should be served by the school and by the government's education policies.  And when a child is ill, then a child is ill.  It's not as if child is missing lots of school through truancy - and even if they were we would have to look at the reasons why rather than simply condemning the child or those who care for them.

I have to admit, my language with the secretary remained pretty calm.  What I wanted to shout at her was more along the lines of "I don't give a shit about your targets.  I care about the health and wellbeing of my child.  Why do you place an artificial target above children?  Is this through stupidity, fear, or anti-human evil?"  But no, it's not done to say things like that to school secretaries.  Saying things like that may be honest, but it's counter-productive!

The Measles Vaccine: I Am Told It Is A Terrible Thing

Scrolling down my facebook feed this morning I found this image and a link to an article on vaccination deaths.

On the face of it that's a terrible pair of statistics.  On the face of it, with just those numbers, anyone would be up in arms and call for the banning of measles vaccines.  With just those numbers, nobody would call for a return to the almost universal measles vaccination program in the USA in the 1990s.  Everyone would applaud those who stand against the pressure to vaccinate their children.

And of course the site on which the image is found must be a trustworthy medical site - after all the writer of the article and editor of the site has a BA in Bible and Greek so you know he knows a great deal about medicine!  As he writes in his testimonial, "Any health product, medicine, or natural cures are worthless if you don't know God and His incredible love for you, and understand His will for your life." With words like that you know you're utterly safe listening to whatever he says about medicine.  Perhaps that's enough sarcasm for today.

But of course there is another face.  Another side to those frightening statistics.  Those numbers do not tell the whole story.  As it turns out they don't tell the story at all.

Yes, I believe measles vaccinations work.  I believe they are a very good thing indeed. If you look at the number of deaths and hospitalizations due to measles before the introduction of the vaccines it becomes bloody obvious.  Excuse my language!

In the period before vaccinations were introduced there were 3 to 4 million cases of measles in the US every year resulting in 48,000 hospital stays, 400-500 deaths and 4000 cases of encephalitis.  This was a drop from 5,300 deaths a year a few decades earlier, simply because there was far, far better medical care in hospitals in the 1950s than in the 1910s.

So without vaccines and with medical care there would have been probably nearly half a million people in hospital for measles in the past ten years and probably 4,500 deaths and 40,000 cases of encephalitis. Taking the "facts" I was given this morning at face value, measles vaccination has cut the death rate massively.  And it is alleviated a stupendous amount of suffering.

But let's check the quoted "facts" from the above graphic.

"Fact" One - The "Zero". By 2000, measles had been pretty much eliminated in the US due to vaccinations. The CDC website states, "In 2000, the United States declared that measles was eliminated from this country. The United States was able to eliminate measles because it has a highly effective measles vaccine, a strong vaccination program that achieves high vaccine coverage in children and a strong public health system for detecting and responding to measles cases and outbreaks."  That CDC page is worth a quick read if you have any interest at all in vaccinations or measles - even if, like me, you are not from the USA.

With the lessening use of vaccinations it has returned and is slowly increasing. "Slowly" is what would be expected. You wouldn't expect many deaths from a disease that had almost been wiped out in the nation. Nevertheless, there have been deaths in the US. The above statistic of zero claims to be sourced from the CDC but I could give you direct links to the CDC site that prove the claim to be false. There haven't been many deaths, and that's to be expected, but those deaths exclude other side effects that measles has produced - brain damage, deafness, pneumonia and so on.

"Fact" Two - the 108. This claims to be drawn from VAERS. But VAERS cannot tell you anything about whether a vaccine caused a reaction. It does not track specific adverse reactions to vaccines. Hence such a statistic cannot possibly be drawn from VAERS in any sensible manner. Yes, at some point after being vaccinated against measles 108 people died. But to state categorically that this is because the vaccines caused the deaths is to completely reinterpret the data.

For more information on the problems associated with applying definite causation to the VAERS cases, I'd recommend this rather sensible blog page written be people who devote much time to applying science and sense to the claims of the anti-vaccination campaigners.  Lots of people with far more knowledge than me have written sensible pages online about vaccinations.  Why are you reading me instead of reading those pages?!  Trust those people, not me.  Because just like the author of the article that got me writing, I don't have a medical degree - just two theology degrees.

To conclude, as Newsweek states in this article,  "Those promoting this 108 number appear to be uninterested in widely accepted facts, and most don’t seem to understand the difference between correlation and causation. Or they just don’t care. Their primary interest, it seems, is in waging a PR war against the likes of the CDC. And if they win that battle, it could be a public health disaster for all of us."

Simple Words of Spirit - Received in a time of Complicated Doubt

January 2015. Written in darkness, in temptation to deeper depression – I realise that January is often like that for me, in a week of major doubt. Written in deep wondering whether God is real, whether Spirit is real, or whether I was just fooling myself with an idea, or a collection of ideas.

Like before I was told to pick up a pen and listen and write down what was heard. This time the words were simple. Simple concepts. Because when it comes down to it there isn't anything complicated about a call to return to what's already in the heart. Everything here is easy to understand – and actually easy to do if I let go of all the self-created obstacles. In truth there is nothing in the way of the spiritual walk or the path of learning to serve (are they the same thing?) unless we put it there ourselves.

Parts of the writing that came in the months before that night are more complicated – or at least less simple! Some of it I don't understand with much clarity at all. But this is obvious. A reminder of what is pretty much in lesson one for many of us. The previous writing won't get shared. And any further writing – once I'm quiet enough to hear again – probably won't be shared either. This only gets shared because of its simplicity and its broad applicability to the life of pretty much anyone at some time or other.

One thing – the phrase “the Christ” is a wide one. It doesn't have to imply being a church-going Christian, although I am one and am most definitely called to be an active part of the particular church of which I am a part. The phrase doesn't necessarily have to imply believing Jesus is alive or even that he ever was alive.  Take the phrase for whatever you want to take it.

Fooling myself? Perhaps. Are these words coming from beyond? Are they from somewhere closer to the essence and truth of the Self? Or are they just what my conscious mind says once all the analysis and over-thinking gets turned off? Or all three working together? Simple answer, I cannot say with anything approaching certainty.

Perhaps you have lost the way. But what is the way? And if you have lost it, can you not find it again and walk once more in the path awaiting you? You have allowed yourself to stray, to wander. You have allowed other concerns to impede the one concern. You already know how to return – to read, to pray, to meditate, to serve, to seek that purity.

And though you may at this time feel alone, you are not alone. Deep inside, at your core, you know that you are never alone. And you know that you were placed where you are for reasons beyond your imagination. You are not alone. I am with you. We are with you. Always.

All that remains is that you walk again, cry out again, seek again the within and the without. You can do it because you have strength and will be given strength.

You are tempted to give up. You are tempted to fall away. You ask if there is any point and you ask again whether that which is real is Real.

Do not give in. Focus on the safety. Focus on the revelations of the past until you reach again the revelations of the present – or at least the realisation that you are always in that place.

Again, you are not alone. Your essence is safe. I will be with you, for you, beside you, within you, embraced firmly in passionate love. I will never let you go and will continue to draw you, prod you, lead you and show you the ways into the Way, your Way, your Centre.

Remember the words – the Christ IS your path, the Christ IS at the centre of your being. Look to the Christ. Always. Unfailing. Unceasing. To the Christ. To the Victor. Return.

Return. Listen to the call and return into hope, into fire, into that growth into Being. Pray again. Sit again, alone with me. There is nothing to fear in Way, Being, Life. Come to me again and rejoice. This cannot be said enough. Rejoice. Rejoice.

That's all. You know what needs to be done. Look inside, find the answer. Rejoice. In love, rejoice. Return. In Christ, return. Recommit. To the path, recommit. You know it. Only you can do it. Only you. But never only you – never alone.

Yes, that which is real IS Real. Believe again. Know again. And again, run into reality.