My Struggles With Executive Dysfunction

I’ve been thinking a lot about Executive Function Disorder. It’s mentioned frequently in the list of autistic co-occurring conditions, yet no-one really talks about it all that much. But it’s nonetheless one of the biggest problems for many of us.

Executive Function disorder (EFD for short) happens when there are differences in the chemicals in the brain which affect the frontal lobes, leading to problems with things like organisation, concentration, time and task management, prioritising attention, problem-solving, short-term memory, multi-tasking, impulsiveness and emotional regulation. It’s frequently linked to ADHD and autism, where we’re born with it, but it can also occur as the result of injury or illness which affects the same parts of the brain, eg stroke or Alzheimer’s.

This is me.

EFD is something I struggle with. Every. Single. Day. I work hard, every day - and I do mean hard - on Getting Things Done. My days are a constant wrenching process of me telling myself to do things, setting up reminders to do things, nudging, pushing and prodding myself to do things, even yelling at myself (usually silently, but yelling just the same) to do things. I make all kinds of prompts for myself – LOTS AND LOTS of lists, timers, alarms, notes in prominent places, scenarios in my head, etc, etc, etc - in my attempts to keep myself, my day, my house, my belongings, indeed my entire life, on track.

On good days, I’m moderately successful, complete at least some tasks, and feel reasonably okay about myself. I can give myself a pat on the back, and a breather at the end of the day. I feel like I’ve achieved something. Been something, or somebody. I’m okay. Sometimes I even have several good days in a row, and in the past, I would fool myself that I’d ‘changed’, ‘sorted myself out’, gotten rid of my ‘demons’. I was gonna be ‘all right now’. Not anymore.

Because, inevitably, come the bad days. The failure days. The days where I get out of bed only when something aches, or my body’s needs drive me. When I shower only when I can’t stand my stink anymore. When I eat only when my blood sugar plummets or I feel sick from not eating. When I feel stuck on the couch, looking at all the things that aren’t done, but somehow unable to get up, instead playing games on my phone, reading or just blobbing in front of the TV, or getting obsessed and spending hours online researching something. These are also the days when I tend to make it to appointments by the skin of my teeth, or go grocery shopping so late that half the perishables are gone, and all the sale bargains.

Often a reaction will set in, usually in the late afternoon or evening, when I become so angry and disgusted with myself and/or the state of my house that I rush around in a fury, trying to do as many tasks as possible, running my butt off till I collapse in exhaustion. But even once I do start a task, it’s all too easy to get side-tracked. I can end up with several jobs started, none finished, too tired to complete any, and feeling worse about myself than I did before. Some days, I even end up having a meltdown, or literally bursting out of the house for a walk, so that I can feel I’ve ‘done something’ with my day.

And of course I have to battle with myself to get any creative work done (even this blog post, which has been on the back burner for literally months), no matter how much I love doing it, no matter how much I *want* to do it, until the sheer pressure of both self-disgust and the images and words themselves force me into doing SOMETHING.

I could go on and on – there’s the whole thing, for example, of how once I set up a list, I won’t want to do anything on it, or how I’ve only achieved some measure of emotional regulation in the later stages of my life, or my always-irregular sleep patterns - but you get the picture, I’m sure.

 I’m a mess.

There are basically only four things that can propel me into action.

Firstly, dire physical need, like an achingly full bladder, extreme hunger or thirst, or being so tired I fall asleep on the couch.

Secondly, external impetus, eg a doctor’s appointment, occasions I need/want to attend, or needing to return books to the library before I gather fines. (And there’s usually A LOT of stress involved in all of these, as I check and double-check and triple-check EVERYTHING.)

Thirdly, my own disgust/anger/impatience with myself, as above.

And fourth, the urge to be creative, which has often been my saving grace, but which needs to surge up pretty strongly to overcome my natural inertia. Hence the weeks of creative inaction that are sadly all too common.

And that’s it. There is no ‘natural’ way of getting myself moving. No natural connections in the brain that enable me to ‘just do things’. I have to force myself, or be forced by external circumstances/demands. There is no other way.

It doesn’t help that my Chronic Fatigue Syndrome means I can’t keep on going once I start, I need frequent rests, but once I do stop, getting going again is, well, not easy. Ageing and related ailments also don’t help. I get more and more reluctant to start tasks that I know are going to be extra difficult. And of course, any change, any disruption or extra stress, just makes everything worse. I moved house last year, and to get back to even a degree of good habits has required an added effort.

I have improved over the years, and made progress in developing a more ‘organic’ way of responding to situations, as opposed to the harshness I used to punish myself with. But it’s still a struggle. Nothing ‘just happens’. I don’t know how other people just …get up and do stuff, going effortlessly and smoothly from one task to another. Why, I’ve always wondered, is it so easy for them, and so hard for me? I have absolutely NO – zero, zilch, nada, nix - natural impulses that keep me moving in this way, it’s an endless effort, and all too often, I still end up on the couch, telling myself to ‘get up now, get up now, NOW DAMMIT…’ Sigh.

In the old days, before I knew I am autistic, I never talked about any of this. I rarely mention it even now. It cuts too close to the bone, not surprisingly, as I’ve spent a lifetime feeling ashamed of ‘not being able to get myself together’, and going to great lengths to hide it. Some people have judged me ‘lazy’, ‘useless’ or ‘just not trying hard enough’, not realising how hard I’ve always had to work at keeping any order at all in my life. The worst part is that I believed it too, for too long, assuming I must be deficient or inferior for having to work so hard, and yet still not being able to be like other people.

And to be 100% honest, even now, it’s the one thing about my brain I would change, if I could. Other aspects of my autistic self, I’ve learnt to embrace or ameliorate, eg sensory issues. But this continues to be the biggest bugbear of my life, on a daily basis. So I will continue to wrestle with it, because, ya know, I want a life, I want to achieve things. Not to mention I don’t like living in filth.

But after 60+ years of trying, I’ve accepted that I can only manage it, not get rid of it, and I’m tired of living in shame, tired of hiding my ‘bad habits’, simply because my brain is different. This is how I’m built. On an online test for EFD, I scored 51 out of a possible 64. Not much I can do with that! I suspect that I would have scored even higher when I was younger.

But a frequent mantra of mine in recent times is ‘you are what you are. You can’t be other than what you are’. It applies to EVERYTHING that I am, including this. Learning about EFD, like learning about autism, has made all the difference to my self-esteem. I am what I am. I can be no other. I shouldn’t have to hide that true self.

And nor should any of you.

Things I Wish I Never Had To See Again

 So here we are in April again, and the legions of Autism Awareness are out again. I’ve become quite cynical or maybe just jaded in recent years, as it sometimes seems like the more things change, the more they remain the same. There are so many things, so many people, I wish that I never had to see again. Here are the most prominent of them, and what they say, sometimes outright, sometimes not, but always implicit.

‘Autism mommies’ (and sometimes daddies). (Aka warrior mommies, or martyr mommies on a bad day.) “You’re not like my child, you’re too high-functioning, if you can post online then you’re not really autistic/not autistic enough to understand, what about the ‘real’/‘severe’ autistics, you don’t know how hard it is to raise these children, my child will never be independent, you’re so rude, if you would tone down, if you would shut up, you should say that you ‘have autism’ not ‘am autistic’, I am an ‘autism mom’, I’m fighting autism every day, I am my child’s voice, I want my child to be ‘normal’, my child loves ABA, I don’t care if adult autistics don’t like it, I’m going to Light It Up Blue/wear the puzzle piece/support Autism Speaks anyhow, you’re not really autistic anyway so your opinion doesn’t matter…”

ABA defenders/promoters. “I’m sorry if you were hurt but that’s not ‘real’ ABA, that’s ‘old’ ABA and we don’t do that anymore, my ABA isn’t like that, our children love ABA/their therapist, it’s scientific and ‘evidence-based’, we’re helping these children, we’re teaching them skills, we’re teaching them how to be like other kids, you must want them to not have any therapy or help then, you must want them to grow up to be like animals screaming and pooping in their pants, we’re helping their families, this is what the parents need, it’s not true that ABA is torture or abuse, we don’t punish them anymore, you don’t know what you’re talking about, you’re not really autistic anyway so your opinion doesn’t matter…”

Inspiration porn peddlers. “Look at the wonderful boy who asked the nerdy girl ‘with autism’ to the prom, isn’t he wonderful, such an inspiration, look at this program or device or special class that’s ‘helping’ children ‘with autism’ learn how to talk/interact ‘like normal’/play special sports/be a team mascot, isn’t it inspiring, aren’t they good for doing this, aren’t we good for sharing this? Look at how our faces soften, our smiles beam wide, our eyes glaze over with our own goodness and compassion for these poor creatures, isn’t it inspiring? …What’s that? No, we didn’t ask the autistic kids/teens/young adults what they thought about being ‘helped’, we didn’t include their words, their responses, their ideas, in our article/news item/puff piece, because we already talked to their parents and teachers and the ‘experts’, so it’s not necessary…”

Media bias and ignorance about autistics. “Autism is a disease/epidemic, it’s brain damage, it’s a layer that must be removed to let the ‘real’ child shine, the world would be better off if there was a cure for autism; it’s a childhood thing, mostly little white boys, they’re non-verbal and almost mindless, they lack empathy or understanding of others; they’re nerdy young white male computer geeks, with no caring or empathy and zero social skills; people are saints to put up with/help them, their parents deserve a medal… what’s that? Ask the autistics what they’re feeling? Communicate with them? Consider how things might look from their point of view? Consider whether there might be autistics that don’t fit into these narrow little categories? But we already know All About Autism, because we’ve talked to their parents and teachers and the ‘experts’, so it’s not necessary…”

Biased research on autistics. “We must compare autistics against the ‘normals’ and discover their defect, because any difference is a pathological one, in no way can autistics ever be seen as okay or maybe even better than non-autistic controls, even if we must invent new terms or slant the research results in favour of those controls, even if that involves recasting morally or socially dubious results as ‘good’, and autistic’s purer motives as ‘bad’, because just being autistic is a wrongness in itself, so autistics can never be better at anything, everything they do is wrong simply because they are autistic…. What’s that? Autistics are fine just as they are? They’re not an inferior version of ‘proper’ human beings? Impossible! We’ve already outlined their deficiencies, and we’re the experts anyhow, we know autism best, so it’s not necessary to change what we’re doing…”

Violence against autistics. “Autistics bring in on themselves because they’re weird, they’re the r-word, they’re ‘natural’ targets, what do you expect, if they’d only behave properly they wouldn’t get bashed and bullied and murdered, it’s their own fault; if my child could just be normal I wouldn’t have to do this to them, if I didn’t have an autistic kid my life would be so much better, they’re better off dead anyway, they drove me to it, I’m the victim here; these kids need controlling and suppression so it’s only right that the usual rules shouldn’t apply to them, it’s only natural that teachers don’t want them in their class or have to put them into isolation rooms or tie them into chairs or hold them down on the floor or have them arrested no matter what their age, it’s only right that the Judge Rotenberg Centre uses electric measures to keep them in line, it’s only natural, I mean they’re animals really, so what does it matter what’s done to them… What’s that? Human rights? But they’re Not Really Human, so…”

We know none of this is true.

We know it in the depths of our bones, in the depths of our hearts, in the aching depths of our pain. And we’ve told them so, again and again and again… but they still aren’t listening. In fact, far from listening, too many of them keep coming on to our pages or groups and talking over us, telling us how wrong we are, how defective, and how They Know Better and it’s Their Responsibility to Educate us… and get furiously offended, or loftily ‘forgiving’ and ‘above’ us, when we reject that so-called education. We’ve seen it all before, heard it all before, so many times. Too many times. It just doesn’t seem to end. We have more allies now, but somehow we seem to have more enemies too.

And meanwhile, we suffer. We bleed. We live in agony.

And no-one listens to our screams, our protests, our pleas.

They’re not listening.

I am so tired of this. I wish I could never hear any of the above again. But I know I will. And that’s why I am so tired and jaded and cynical.

Are you sick of autism awareness yet?

Why I Loathe ABA

I’ve always been suspicious of ABA, but I’ve held back on commenting on it much in the past, because I wanted to know what I was actually objecting to. But I’ve found that the more I researched it, the more my horror deepened. The result is that I am now more opposed to it than ever, for the following reasons. (Bear with me, this could be kind of long.)

1) Its Behaviourist Origins. The roots of ABA are in the behaviourism of psychologists like B. F. Skinner. I wasn’t impressed by this theory when I first encountered it at university more than 20 years ago, and I’m even less impressed now.

Behaviourists are only interested in measurable human behaviours, and regard underlying causes of these behaviours as irrelevant, or as something that will change if the behaviour is changed. Lovaas followed their ideas when ‘treating’ autistic children. He even saw autistics as ‘not-people’, empty shells, or raw material that, in his own words, he could ‘assemble into a human being’. 

ABA’s behaviourist approach tells them that autistic behaviours can be ‘extinguished’, and the child will then become ‘normal’ as a result. So, for instance, if an autistic child is stimming, ABA ignores WHY the child is stimming, ie what need it fulfils, and simply works to suppress it. 

2. Its lack of understanding of autism. Because ABA sees autism as just behaviours to be extinguished, ABA therapists usually have zero training in what autism actually IS. In fact, many of them have few qualifications and little training at all, in anything other than delivering the ‘therapy’. They consequently lack any understanding of the underlying neurology. They fail, most of all, to understand that autism is intrinsic to our very beings.

Even where ABA therapists do consider our motivations for behaviours, they invariably get them wrong. And they not only don’t really understand us at all, but refuse to try, or to listen to us when we try to explain. (They tend to simply reply with more jargon instead.) 

3) Its Alarmism. ABA therapists will tell you that your child only has a certain developmental ‘window’, and that if you don’t put them through intensive ‘intervention’, as young as possible, they are ‘doomed’. They paint a scary picture of your child becoming a faecal-smearing, head-banging, non-verbal, non-toilet-trained, highly dependent adult, if they don’t have this therapy.

It’s nonsense of course. It entirely ignores that autism is a developmental DELAY, and that there is no predicting how any child will develop in the future. They may not progress even if they’re ABA’d to the max, or they may progress just fine without it, but in their own time. Because a child is not doing ‘x’ at a given point, doesn’t mean they will never do it. Autistic personal histories are replete with instances of sudden leaps in abilities and skills. I have experienced them myself.

But ABA promoters don’t want you to know that, because that would take money out of their pockets. Make no mistake, ABA is primarily a money-making enterprise, and autistic children and their real needs and developmental trajectories come way down the list of importance. (It also seems to have some of the hallmarks of a cult, but that’s a post for another day.)

4) Its Creation of Compliance Junkies. ABA places great emphasis on training the child to do exactly what the therapists and other adults around the child want, when they want, as they want it. The child is not allowed to say no or refuse to participate. It uses repetition ad nauseum, till the child learns to ‘behave’, ie to do what is demanded, over and over, regardless of whether what is demanded makes any sense to them, or is even useful to them. They learn that their needs and wishes will be ignored, and that they must comply or else.

The end result is that ABA’s compliance/approval junkies lose touch with what they really feel. They become approval seekers, always doing as they are told, ignoring their own feelings and invasions of their personal and physical boundaries, and thus they become ripe targets for any abuser.

5) Its Abusive Nature. Forty plus hours of ‘work’ per week? Much of it boring and repetitive in the extreme? What other young children have that expected of them? The rigid insistence on the therapist/parent ‘winning’ against the child’s desire to get out of it is abusive in itself. The child’s will is systematically broken.

And that’s without the physical forcing often done – I have watched video after video where the child is pushed to do the ‘right’ thing with ‘hand over hand’ (ie the therapist forces the child’s hand to pick the right card etc), or pushed into or pulled out of a chair. Even supposed ‘rewards’ can be physically invasive, tickling and grabbing the child for a bearhug was also common. 

Manipulation is also frequent, and can be a form of abuse. Emotional withdrawal when the child does something ‘wrong’, or taking away the child’s favourite things and doling out time with them as a ‘reward’ for compliance, are common tactics. Any distress the child displays over this is ignored. Meltdowns are also ignored, as ‘unwanted behaviour’ that must be ‘extinguished’. They are not seen as the cries for help they actually are. 

Originally, ABA was accompanied by hitting or yelling if the child didn’t comply. Some (though not all!) modern ABA tends not to do that, leading some proponents to claim it’s ‘different’ to ‘old’ ABA, and hence not harmful. But don’t be fooled. Physical violence or no, mental/emotional abuse is frequent and almost intrinsic to the therapy.

6) Its Ignoring Consequences. Some of the first children who went through the whole ABA-for-years thing are now young adults. Many of them now suffer from PTSD, depression, anxiety disorders, low self-esteem, fear and mistrust of adults, or other mental health issues. Yet the ABA industry has never done any follow-up on the long-term consequences of their ‘therapy’, that I’m aware of. 

They also refuse to acknowledge that extinguishing an essentially harmless behaviour can see it replaced with another and far worse one, if the original need is still unmet. Suppressing stimming, for instance, can lead to an individual developing self-harming habits instead, such as cutting or gouging their skin. Or they might develop addictions, aggressive behaviours, suicidal ideation, etc.

But even these things, bad as they are, still don’t get to the heart of what I loathe most about ABA, which is this…

7) Its Demonisation of Autism. Autism is cast as a Big Bad Thing, a horrible ‘disease’ or epidemic, which has ‘stolen’ your child and which only ABA can ‘rescue’ them from. Parents are told that autism is ‘ruining’ their child’s life, and potentially that of the parents and the rest of the family also. So ABA is saturated in the autism-negative mindset. It promotes normalisation, at the cost of the child’s autonomy and natural way of being. It’s not alone in this, of course, but it does play a big role in perpetuating all this negativity.

The truth is that autism simply *IS*. It comes with its share of difficulties and problems, but it’s not a horrible thing to be in itself. The horrible part of being autistic is how we are treated, including by ABA therapists and parents who, having swallowed the rhetoric, have lost sight of the child in front of them, at least for now. Some do come out of this trance later, and regret what they’ve done, when they see the results in their kids. But many seem to be almost brainwashed – as do their kids.

ABA proponents have a standard set of answers for criticisms like the above, which I’ll get to in another post (this one is long enough!). For now, I have this to say – 

Autistics have the right to BE autistic. They have the right to behave autistic, to develop at their own pace, to receive support that actually helps them, and to be free of being coerced into behaving like the NTs they are not. They do not deserve to have an essential part of their very being quashed, denied, hated and forced into repression.

Please, parents, don’t ABA your kids. For their sakes, and your own.

Notes Towards an Aspie Spiritual Code

Some time ago, I came to realise that much of the spiritual writings I read are actually not that useful to me. They are, I realised, geared to the needs of NTs, not aspies. Well, no surprise there really. But what, I wondered, would an aspie-centered spiritual code look like?

This is my attempt at it, based on my own experience, and those of a few other spiritually-minded aspies I've talked to or seen the writings of online. Note that I'm not trying to start any arguments here, rather I'm thinking of those autistics who are already spiritually-minded, but aren't sure how to approach their spirituality from an autistic standpoint.

The Divine Power is logical. The Divine Power is many things - Cosmic Intelligence, the silently beating Heart of the Universe, the Force that created, shapes and connects all of the Universe and is immanent in it, the Ultimate Enigma, and much more. What it isn't, is some irritable old man (or old woman) sitting on a throne on a cloud, throwing thunderbolts at anyone who transgresses moral codes a saint couldn't keep to. That defies logic and common sense. We need a logical God.

The true nature of the Divine Power is Love, a love so powerful it is beyond comprehension, totally unconditional, and way, way beyond all the restrictive petty things that often masquerade under the name of "love". We don't have to 'earn' that love, and we won't lose it if we're 'bad' in the eyes of the rest of the world. Of course it's better to behave in certain ways, for our own sake as well as others, but, like a Perfect Parent, the Divine continues to love us no matter what. Even if no-one else does, you are loved by Spirit.

All are Children of the Divine. We are all sons and daughters of the Life-Force. Many aspies have little difficulty with regarding all as inherently equal, due to our lack of ability to see the social distinctions that others insist on. My feeling is we need to build on that, make it a central focus of our spirituality, allowing no prejudice against any other, no matter who or what they are, to enter our hearts and minds.

The Divine doesn't play favourites. It has no bias on the basis of gender, race, sexuality, nationality, religion, sect, etc, etc; and therefore, it follows on, It has no bias on the basis of neurology or able-bodiedness either. The Divine didn't create us as we are, only to judge us and reject us for being exactly that. That also defies logic.

All of us can experience the Divine. No matter what our beliefs, regardless of whether we belong to a formal religion or not, or what name we call the Divine Power, we need to experience It for ourselves. We tend to 'learn by doing', and so mere dogma out of a book, no matter how holy, will almost certainly not suffice. We can build a solid relationship with the Divine through prayer and meditation. In my experience Divine support tends to be either fairly indirect, or not quite in the shape I might expect or think I want, but it does happen.

We need to keep our spirituality simple. Convoluted theological abstractions tend to tie our brain in knots. Especially if we're the visual type of autistic, as we almost certainly can't understand what we can't create a picture of inside our heads. That doesn't mean that we can't develop a moral code, as we can easily imagine concrete examples of behaving morally, and understand and follow rules. Nor does it mean we lack intelligence, just that it's better that we keep our spirituality not too complicated.

Don't hate the world. It's hugely screwed-up, yes, and functions by rules and values that are often not ours. Plus, we're often treated badly by it. But Hate only damages you in turn, and separates you from the Divine. So many in this world are deeply damaged, and have lost their way, and lash out at others as a result. The world is a troubled place, and it needs compassion, but if you can't manage that then work on pity. Or at least indifference.

Don't hate the Divine either, for what people do. Yes, the Divine is immanent in everything and everyone, so we all have a core of Spirit within, whatever we call it - 'Higher Self', 'Christ Consciousness', etc - but some drift a long, long way from that Spirit within, or they deny or suppress it. We all have free will, and unfortunately some people use it to do bad things. If we are a victim of these people, that doesn't mean we've been forgotten by the Divine.

The Divine wants us to protect ourselves. Being spiritual doesn't mean we have to be patsies. Whether we can feel compassion for the world and the screwed-up people in it or not, we do nonetheless have the right to protect ourselves from those who would harm us. Just as we might feel sorry for the tiger in its cage at the zoo, but we wouldn't jump in the cage and try to pat it, "there, there, poor kitty," we have the right to distance ourselves from or eject from our lives any toxic, abusive or unwelcome people. This is an act of self-love, self-respect, and self-nurturing, which the Divine wants for us.

And perhaps most important of all... The Divine Power is Eternal and Unchanging. You know how we aspies dislike change. Even people that love us and that we love can die, or leave us, or fail us in some way. The Divine will not. Ever. Even when we think It has, It's working for us behind the scenes. Remember that tale of the footprints in the sand? It's there for us, forever and ever, amen. I think that's pretty cool.

So there you go. Maybe this works for you, maybe it doesn't. I'd like to know, either way. And maybe you can improve on this, write something better. I hope so. I would never think that I have the last word on anything, so I'm open to new ideas.

Why We Need Mentors

I've called this "Why We Need Mentors", but it could just have easily been titled "What Happened To My Life?"

I began my adult life with a whole bunch of expectations, most of which involved assuming my life would be like other people's - marriage, motherhood, mortgages, the white-picket-fence-with-2.5-kids life in the 'burbs' thing... I didn't truly know how people got all that. It seemed to 'just happen' for them, and so I presumed it would for me too.

Well, some of it did. I did get married and become a mother, though younger than I'd thought I would. My marriage however was an abject failure - I made a lousy choice of mate, who proved not a good provider or all that stable, and we were never able to buy our own home. And then I started reading feminist stuff, eventually leaving the marriage and coming out.

 Still, all that meant was that I reframed my expectations. Instead of a man, I assumed I would find a long-term female partner, I'd get my degree, get off the benefit, and we'd settle down in happy domesticity, a sort of lesbian version of the white picket fence thing.

It didn't happen. Instead I had a string of short-term failures interspersed with long periods of celibacy, where I tried to figure out "what I did wrong", and how to do it differently next time. Then I'd launch myself out into the mating market again, thinking I'd solved all my problems, only to find - BANG. Another failure, and I'd reel back into celibacy again.

Friendships were another area I consistently failed in. They imploded, or drifted apart, or just never got off the ground properly in the first place. I couldn't understand it. I thought I was being friendly, helpful, nice, etc, why did no-one want to know me? Why was it such a struggle to connect with others?

I was attending university on and off during these years, but at times I struggled there too. Academically, I was doing okay, getting mostly As and Bs, but there was a lot of social stuff that I just didn't 'get'. I was putting a lot of pressure on myself at this time to be 'normal', and eventually, that pressure resulted in my health collapsing under the strain.

It would take another ten years before I would be diagnosed with Chronic Fatigue Syndrome, but the pattern was clear from the beginning - any severe stress, and my health took a nosedive. I began to use it as a reason to not do certain things, but only because I couldn't articulate my deeper, more long-standing reasons, which no-one would have accepted or understood at that time anyway. I still kept believing that my life would, at some magic point, straighten out, that everything would fall into place and come right. It never did.

I ended up leaving the city and living in the country for many years, while I tried to heal. During that time I finally managed a long-term relationship - only it wasn't exactly as happy as I'd dreamt it would be... I tried so hard to 'fix' it, draining my health, my vitality, the last of my youth, hope, romanticism and emotional energy in the process. I finally left only when I felt I had nothing more to give. And only then did I come to understand, way too late, that I'd been the victim of sustained emotional abuse.

I took stock - no partner, few if any friends, no job, no money, no possessions worth a damn, my health a wreck - where did I go next? Eventually I moved away to be closer to my family and start anew. Life since then has had a few ups and downs, but I still find myself, in my late fifties, poorer than I've ever been. I have no permanent job and little chance of one, my health is still not the best and in some ways is getting worse with ageing (eg the onset of arthritis), I've never owned my own home and am never likely to, short of a miracle. My family are supportive and help when and as they can, but still, life could be better. A lot better.

As for relationships - well. I picked all the wrong people, it's true, but then I could also say that none of the 'right' ones ever picked me. Suffice to say it's an area I'm not willing to venture into again, for a whole host of complicated reasons, of which being 'burnt' too often is only a part. In terms of connecting to others, the best thing that's happened for me in the last few years is not relationships but the aspie friendships I've made - they're one of the highlights of my life now.

But overall, my life has been, in many ways, a train wreck. Very few of my dreams and expectations have ever been met or realised - I've never owned my own home, never had a relationship that was worth the effort involved, never had a career (except for my writing of course, but I've yet to work out how to make that pay), I didn't even manage to finish my university degree. I rate raising my daughter as my biggest achievement - and don't get me wrong, I would still rate it that way no matter what else I'd done - I just wish I'd been able to achieve a whole bunch of other stuff too.

So what has all this to do with mentors?

It's this - when things have gone right in my life, it's always with the help, guidance and support of others. A typical instance is my getting to uni - for a while, I was friends with a woman who'd done several degrees, and who 'knew the ropes'. I quizzed her endlessly, and she very patiently showed me how to enrol, told me all about degrees, courses, prerequisites etc - we later drifted apart but I'll always be grateful to her for her assistance. It's very likely that I wouldn't have gotten to uni at all without her help. It was typical of a consistent pattern - if people were willing to patiently explain things to me, and guide me through new things, my life went much, much better. Other times, I got through life changes only with the practical help of family and friends. When I was lacking such support, that's when my life would go haywire. The inevitable result was a good deal of anguish and stress.

Maybe some of all this would have happened anyway, aspie or not, mentors or not, - I would still have come out for instance. But there's no doubt in my mind my life would have gone a lot better, if only people had realised just how ignorant and in need of help I really was, and given me a lot more guidance.

Many other aspies seem to be the same, I've heard many lament how they can't make or keep friends or relationships or jobs or stay in education, how their lives are going to ruin, they're homeless or unemployed or whatever, because they just don't know how best to get by in the world, they lack the practical knowledge or skills or social skills to rescue themselves - and no-one is helping them.

                                                                                                                                          
WE ALL NEED MENTORS. Everyone of us on the spectrum needs mentoring, sometimes throughout our lives. It doesn't have to be a big, formal thing - though that can help those who don't have families etc to step in and do this role - but it is a very real need, even when the individual is well into adulthood and seemingly independent.

Now, I understand that most people live busy lives and they can't always spare the time - even if they understand the need - to mentor someone. But whenever anyone, be it a private individual or a member of an agency or organisation, can fulfil this role, I would plead with them to do so, as the lives of the autistics they touch can only be better off for it. Because with the right practical help and patient support, we can achieve great things.

That Autism 'Suffering' - Part Three

In this final installment of my investigation into the causes of our suffering, I examine 'external' causes. Not all of us will suffer from all the internal causes, but it's probable we all do, in one way or another, from the external ones. These can be roughly grouped in the following categories -

      i) Other people's attitudes towards us - gross distortions and misunderstandings of what autism actually is, what an autistic child or adult 'looks like', or behaves, or why, or what we're capable of, invariably cause us distress. Hearing all the negative opinions so many have about autism can cause us to feel alienated, self-hating and depressed, especially if it's coming from those closest to us, or from a seemingly ignorant and blinkered media. These distorted beliefs can see us -

- as children, hearing our parents say to others, right in front of us, that they wish we weren't autistic, or that autism is 'dreadful', or that it causes them to suffer, etc, etc.

- having adults refuse to listen when we try to tell them we're being bullied, and/or being told it's our own fault, for 'choosing' to behave in certain ways;

- being criticised for 'attitudes' we don't in fact have, or told we're being something (e.g. rude) we in no way intended, and then not listening when we tell them this;

- being told that we or our child "don't look autistic", or that we're "just jumping on the latest bandwagon", or "making a big deal out of nothing";

- having it assumed we "can't' do" such and such because we're autistic, and then if we show we can, being told that we "can't really be" autistic then;

- having what we say ignored or discounted because we "don't understand" emotions or ourselves or can't do theory of mind, etc, etc;

- having hostile autism parents call us various nasty names, and claim that if we can communicate at all we "can't really be" autistic, and should be ignored;

- having certain autism organisations describe us as 'thieves' of the 'real person' supposedly hidden underneath, or as destroyers of families, or 'brain-damaged', or defective in some other way;

- having people tell us how "weird" we are, or asking "what planet do we come from", and even suggesting we should go back there;

- cringing as yet another autism-negative article appears in the news;

- fearing for our personal safety in the face of some people's hate-filled attitudes.

All of these, and more, are daily examples of how people's attitudes cause us suffering.

      ii) Other people's treatment of us - There are many ways we are actively 'managed' that induce suffering. Among just the most obvious are -

- forcing us to make eye contact or talk or move in 'non-autistic' ways;

- stopping us from stimming or following our special interests;

- suppressing any other facet of our being that is obviously autistic;

- inflicting 'therapy' on us that is boring, meaningless, frustrating or even harmful or dangerous;

- incarcerating us in institutions like the Judge Rotenberg Centre or other psychiatric facilities or even jail;

- forcing us into counselling or psychotherapy that ignores our autism and blames us for our problems;

- abusing or bullying us as children or even adults;

- laughing or jeering at us;

- ridiculing or belittling us;

- rejecting or excluding us;

- firing or refusing to hire us or bullying or harassing us in the workplace;

- refusing to give us the support we need to access education.

      iii) Other people's social interactions with us - Our difficulties interacting with others are the result of the above two 'external' factors - others not understanding us or behaving well towards us - combining with various 'internal' factors such as lack of ability to read non-verbal clues. The results can only be painful. Bewildered and hurt, we often reel away into semi-reclusiveness. Or we are cold-shouldered and excluded from social interaction - which doesn't help at all, we never understand why, and it just hurts.

So in writing this, I've realised that, though there are far more 'internal' causes than 'external', the external ones are SO big, SO influential, they inevitably interfere with the internal ones. People don't understand us, don't provide support or the knowledge or skills we need, leave us to flounder and fail, or treat us in ways that actively make our lives much, much worse. Hence, whatever the apparent cause of our suffering, the primary cause is the attitudes and practises of others. And if these external causes of suffering could be reduced or eliminated, then so much more energy could flow into providing the practical support and accommodations needed to overcome the internal causes of our pain and suffering. It truly is all about attitude, and the behaviour that follows from that.

That Autism 'Suffering' - Part Two

In this next part of my investigation into the 'suffering' of autistics, I look at the things autistics themselves - or in some cases the more objectively observing of their parents - put forward as the actual causes of autistic pain and suffering (as opposed to what many non-autistics believe are the causes), along with possible ways non-autistics can support and help us.

There are quite a number of them, and in this post I'll look at the 'internal' causes, those  that arise out of our 'different' way of being, and/or are closely associated with autism.

      i) Communication problems - especially if we're non-verbal, but even those who can speak sometimes have difficulties. We might 'lose our words' under stress, not be able to find the right ones, struggle to process and respond quickly in conversations, or just find it so much easier to write than speak. The use of computers, other communication devices, sign language or writing, along with simple patience on the part of others, would go a long way to help.

      ii) Auditory Processing Disorder - This is part of i). If what we hear sounds distorted or garbled, and it takes us ages to 'decode' what's been said, then we can feel stupid, embarrassed and hurt by others' reactions to this. Others can help us by speaking clearly, minimizing background noise, and waiting patiently for our responses.

      iii) Executive dysfunction - basically, we can't get our lives together. The results can be disastrous, and extremely distressing to us. We will flounder through life and ultimately fail at it - or at least feel like total failures - unless those around us help us learn how to organise ourselves. This is important not just for children, many adults on the spectrum could also do with such support.

      iv) Emotional Regulation - Many autistics have difficulty identifying, expressing and/or controlling their emotions. This can cause a great deal of suffering, especially if it triggers public embarrassment or hostility. There are various methods of helping autistics with our emotional states, including emotion charts, meditation or medication, but needed first is an understanding that this isn't a case of us just being 'spoilt brats' or 'cold and unfeeling', but a real and often painful challenge.

      v) Fear of change - Just about every autistic I know gets distressed by change. Something about our minds is too rigid to cope with it. Visual aids of various kinds are helpful, as is lots of preparation and planning beforehand, and being taught the 'Plan B' approach. Ultimately though, only repeated experience will help us develop the skills and maturity to get through changes.

      vi) Lack of social skills - Our lack of any 'intuitive' knowledge of how to interact with others, combined with inability to read non-verbal clues, means frequent social blunders. The resulting hostile reactions often cause us considerable distress. If others grasped that we are socially 'blind', and certainly don't intend to offend, and instead of condemning us quietly advised us on what, and what not, to say or do in situations, and (most importantly) why, it would assist us a great deal.

      vii) Poor Impulse Control - Impulse control seems to be a problem for many autistics, and can cause much suffering, whether it's through rushing headlong into possible danger, saying things without thinking, being unable to restrain ourselves from 'compulsive' behaviour, or even 'burning our bridges' because we've made too many mistakes, or plunging into disaster in some other way. Self-regulation is a very important skill, and one we usually need help in learning. It's difficult to learn it without such support - I speak from personal experience here.

      viii) Sensory overload - this one is tricky. The immediate causes are outer - i.e. the sensory input - but the ultimate cause is internal, i.e. our senses turned up to the max. The difficulty with managing it is twofold. One, heightened senses can also be wonderful, such as when listening to our favourite music. Two, not all the sources of over-stimulation can be avoided. It's pretty hard, for instance, to stop birds tweeting, dogs barking, or babies crying. Much relief can be found however. For example autistic students and employees could be allowed to wear sunglasses, caps, etc, in the classroom or workplace, lighting can be adjusted, and so on. Acceptance by others of the desperate need for such accommodations is crucial.

      ix) Meltdowns - These can cause us a great deal of suffering, both in the lead up to them, and in the actual experience - not to mention other people's unsympathetic or hostile reactions. We don't want them to happen, but can't always prevent them. If others understood the difference between meltdowns and tantrums, and did their best to assist us in eliminating the causes and creating safe, quiet places we can go to be alone and recover, it would go a long way to alleviating our suffering in this area.

      x) Gut/dietary problems - A lot of us have sensitive digestions. If an autistic person is having lots of diarrhea, constipation, etc, and constantly feeling or seeming unwell, then it may be worth trying different diets. Note though that even that if we don't eat, say, gluten, this doesn't mean we will magically not have autism anymore. It just means that if we're not sick, we will have more energy to deal with life and its challenges.

If my solutions to our suffering seem glib, I don't mean them to be. I know that they usually entail a good deal of hard work, on the part of the autistics themselves, and/or their parents. But what does strike me is that a change of attitude combined with practical help will alleviate our suffering far more, and far quicker, than any hyperbaric chambers or bleach enemas or worms or any of the other and often ridiculous 'cures' being touted by the autism industry.

In my next post, I will examine the 'external' or 'outer' causes of our suffering.

That Autism 'Suffering' - Part One

A while back, a friend of mine was sent an email by an autism parent, angrily reproaching him for trying to stop autism parents doing certain treatments on their autistic kids. He claimed, as many such parents do, that he and others were simply trying to "stop their pain and suffering".

This idea of autistics ‘suffering’ is something that bugs me. I feel it needs more attention. It's a big issue, I've realised, so I'm going to split it into three parts.

In this part, I ask what is it that parents (and all the autism 'experts' and autism industry that caters to them) are seeing, when they say their child is ‘suffering’? (And please note here, I am NOT talking about those who use various therapies in service of what I call the 'maximisation' approach, but rather those who form what is not-so-fondly known as the 'curebie' brigade, who take the opposite or 'normalisation' approach.)

Firstly, there seems to be an assumption on the part of these parents (and others) that simply being autistic means an individual is ‘suffering’. Sometimes they appear to think this is so through having observed some aspect of their child's behaviour, e.g. frequent crying, meltdowns, or the child's frustration when they can't communicate. So they think, "well, this is caused by my child's autism, therefore if I can get rid of the autism, I will relieve their suffering." That autism is fixed at the genetic and neurological level either isn't understood or isn't accepted, nor do they seem to consider that there might be specific, removable causes for that behaviour, i.e. some other (and easier) way to alleviate their child's difficulties that doesn't involve attempting to remove their autism wholesale. They 'have' to eliminate the autism, they believe, and so anything and everything that might achieve this is okay. Some of what they do is patently useless (hyperbaric chambers? worms? really?), other stuff alleviates some distress in some cases, e.g. gluten free diets (though only, it seems to me, where there are definite physical signs of ill-health), but don't rid us of our autism, per se. Yet other treatments, such as bleach enemas, are exponentially more harmful. Parents who take this approach often seem to feel either that a 'temporary' suffering is necessary to a long-term 'solution', or - more drastically, in some cases - that they'd rather see their kid dead than autistic.

More often, however, the underlying thinking seems to run like this - "If I was autistic, I'd be miserable. Therefore, they must be too, and I have to do everything possible to eliminate the autism, so they can be happy." The parent thinks, for instance, that a child who spends a lot of time alone must be miserable, because they would be, if they had to be alone that much. That we might have different needs, that we might not only be perfectly happy alone, but in fact need large chunks of solitude in order to 'recharge' our emotional /social/ physical batteries, so we can go out into the world again, never seems to occur to them. Or if it does, they take that somehow as further 'proof' of what's 'wrong' with autism.

These above beliefs, in turn, combine with another belief - or simply an assumption -namely that autism itself is a bad state. It's 'abnormal', and therefore 'of course' those with it 'must' want to be relieved of it. Because being 'normal', i.e. NT, is not merely superior, but the only 'right' way to be, and only 'normal' people can be happy. Right?

Wrong.

And yes - before anyone points it out - I do accept that many of these parents are simply ill-informed, tragically caught up in the whole 'defeat autism' thing, and are genuinely just trying to do the best they can for their child. I know this. Nor am I denying that being autistic often means experiencing pain, frequently, and rather a lot of it. I wrote a post  here on just that recently. However, I believe that our pain is not through being autistic per se (i.e. the different way we think, feel and react to the world, which forms the core of our autism 1), but through difficulties that arise out of that different perception, or 'co-morbids' associated with autism, and/or - most especially - other people's reactions to our autism. Yes, it can be difficult to separate out all these things, but I'd like to try, so as to tease out the real causes of our 'suffering'. They seem to fall into two main groups, and in the next two parts, I will examine those.

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1 It has been said (though I can't remember by who) that left alone in a room, our autism 'disappears'. That is, we're okay until we have to interact with the world. It's then the pain and suffering starts.