Very British Anger/Autism in the media

I wrote an email today. it took several hours and ate many head spoons, but hopefully it makes sense and shows the powers that be an alternative perspective. maybe they'll even do something about it...

Dear BBC Newswatch,

I am a 24 year old autistic woman who enjoys watching documentaries. because of this, I have watched the majority of documentaries featuring this condition that have been broadcast in the last decade. I have noticed a certain lack of variety in the portrayal of the autistic community in these programmes, and there are several potentially harmful stereotypes perpetuated that I would like to bring to your attention, as well as some underepresented groups

Firstly, gender. While I am aware that around 80% of those with an autistic spectrum diagnosis are male (although many in the neurodiversity movement believe this is due to diagnostic bias) I can only remember seeing 1 autistic female portrayed on TV. not only that, but she wasn't even one of the featured autistics. the documentary team followed 3 adolescent autistic BOYS as they tackled the issues of growing up and one of them went on one or two dates with a girl, who happened to also be on the spectrum.

the vast majority of autistics featured in documentaries are children. thinking back over the programmes I've seen, I can't remember seeing any autistics older than the typical university age. while I do understand that diagnosis is much easier with children, there are many people living with an autistic diagnosis and identity in their 30s, 40s and beyond. a more varied portrayal with respect to age would help tackle the steriotype of autism as a disorder primarily affecting children far better than the familiar voice-over telling us that "autism is a life long, developmental disability". seeing positive but realistic portrayal of adults on the spectrum would also reassure parents of autistic children who, both in documentaries and real life, often express concerns for their children's uncertain future.

when adolescent or university aged boys are shown, they are usually either "low functioning" individuals intended to inspire pity or highly intelligent geeks, studying maths, science or computers. this reinforces stereotypes both in the minds of the young autistic community and in society generally. I have heard a lot of people (tragically both on and off the autistic spectrum) express the view that it is ok to be autistic, but only because we have "special skills" in these areas. this view is damaging to autistics who don't fulfil the stereotype, by implying that they are somehow failing at being acceptably autistic, as well as those who do, by implying that their intelligence and hard work are just a symptom of their autism.

there is also a strong focus on the ways in which parents are affected by having autistic children, to the exclusion of the experience of autistics. this is unfortunately reflected in the attitude of many larger autistic organisations towards autistic people who attempt to self advocate. further, by encouraging the view of autism as the demon responsible for parents misery, you are denying a truth that autistic people know instinctively; autism is not separable from the autistic person. knowing this, while hearing that autism is responsible for all the problems our family might be experiencing, can be very damaging to a young autistic, preventing them from accepting their diagnosis and themselves for years.

in addition to all this, there are many other minority groups not represented in these programmes, such as ethnic minorities and sexual minorities. while I cannot comment on the specific experience of black autistics (as a white person) I am a neurodiverse queer. intersectionality (where someone belongs to more than one minority group) often leads to feelings of isolation far more acute than those who belong to a single minority group. I have met several autistics (and other disabled people) who's sexuality was dismissed because society views us as inherently non sexual and unable to know our own minds (possibly, in the case of autism, this is linked to the practise of focussing on children in the media, which infantalises everyone on the spectrum). in addition to this, many LGBT spaces and events are not autism friendly and the negative views present in society at large are often reflected in the LGBT community.

I understand that this issue is not unique to the BBC, and will be contacting the other channels in due course. I also appreciate that it is difficult for the (I'm assuming) majority NT (neurotypical) programme makers to see where they may be reinforcing stereotypes, and I'm grateful that our British TV seems to take a more progressive view than our US counterparts. however, there is definitely room for improvement. I have a few suggestions for future documentaries.

1. A documentary about autistic parents (as opposed to parents of autistic children). there are a lot of members of the apsies for freedom forums who are raising children of various neurotypes, often in neurologically mixed marriages (most commonly NT/HFA or NT/Aspergers) which presents a unique and interesting set of challenges (negotiating different communication styles within a couple, for example). while parents don't have favourites, it is interesting to note that autistic parents seem to see a lot of their younger selves in their autistic kids. this could be part of a larger series on different parenting challenges (for example, an episode on polyamourous families could explore similar communication difficulties between parents)

2. as a way to introduce the neurodiversity movement, a documentary team could follow several autistics, but focus on their opinion of the diagnosis, rather than the practical issues. the team could look at the way a recently diagnosed autistic is affected by their families views, and contrast that with an autistic self advocate (who could probably describe their own journey towards self acceptance). they could also compare the views of those diagnosed in very early childhood to those diagnosed much later.

I hope to hear from you soon,

[name]

Out and Proud (but only if you know the code)

I wear my asexual loopy scarf most of the time. it's maybe 9 or 10 feet long, made of a chain of "loops" knitted in black, grey, white and purple (the colours of the asexual pride flag) and gets comments fairly often from a surprising variety of people. I'm very comfortable with being asexual, and yet...I never seem able to "out" myself when people ask about the scarf.

well, I say I'm very comfortable with my (a)sexuality. the truth is always more complicated, and this is definitely the most awkward sexual identity I've ever claimed. it's harder to explain to outsiders and can be very isolating, particularly when dealing with prejudice.

so, what prejudice exists against asexuals? well, to start with, this question is usually followed up with a statement about a subject like same sex marriage. this is aimed at dismissing any claims of prejudice by showing that the asexual community is not fighting for it's legal rights, and therefore we just need to get a sense of humour about it, or avoid lap dancing clubs or something (in exactly the same way that the current campaigners against page 3 are told that sexism doesn't exist). we know that in the eyes of the law asexuals (or women) are equal, but we want more. yes, the fight for legal rights like marriage equality is important, but the soft stuff still hurts when it's there every day.

but what "soft stuff"? I thought you said you weren't out? no, I'm not comfortable coming out. I generally out myself as "bi" if anyone asks. the usual reply is "so, you're a slut?". the real question is, why would an asexual rather be called a slut than come out as ase? the truth is probably that it hurts less dealing with prejudice directed at someone else's identity. I know how to challenge the slut lable, but not the asexual equivalents. if I came out properly, the responses would range from "you're just saying that to get attention" (the reaction I actually got when I first came out) to men threatening to "fix" me with their super powered genitals (yes, a lot of asexual women really do hear that). where do I start when trying to tackle the idea that my life is so empty, I need to attention seek with a fictional sexuality? what about the suggested rape therapy? or other questions on my physical health ("have you had your hormones checked?"), my past ("did your uncle, you know, "touch" you?") or my appearance ("but aren't asexuals just people who can't get any action? I'm sure with a bit of make up..."). I know the only way to make it better is to challenge the idiots, but most of the time I just don't have the head spoons.

so, the asexual community must be very important to you? well, no, actually. I'm much more comfortable in queer space. part of this was that I found it difficult to come to terms with being asexual and autistic. not with either identity, but with their coexistence. autistics are almost always infantilised in the media which, combined with their difficulties forming romantic relationships, causes them to be perceived as non sexual beings. asexuals are often dismissed by claims that they just can't get laid, and if this can't be put down to looks, some people will claim that they must be "a bit autistic". obviously, neither group likes this situation and, being a proud autistic woman, I resented the fact that I was reinforcing the stereotype by my existence. I'm also sex positive, which doesn't sit well in parts of the asexual community. in addition to this, when I eventually decided to try, I had a bad experience in an asexual forum.

so I wear a symbol of the identity that I wouldn't dare speak of. I wish of higher visibility for a community I'll probably never call my own, so that teenagers like I used to be might feel like they belong. I'm a coward and a hypocrite, too weak to stand up and be counted. I'm out and proud, but only if you really know what you're looking for.

as a side note, I eventually managed to write one of the 3 messages I mentioned in the last post and now have a phone number that will hopefully allow me to sort out the epic passport fail.

the problem with haircuts...

...is that they're not permanent.

OK, no. that's not exactly true, but they can be difficult in ways that are hard to explain in the "real" world. so, as part of my (apparently never ending) quest to find words to explain and organise all the mess inside my head, and inspired by several other blog posts I've read recently, I'm going to tackle haircuts.

well, what's so hard about getting a haircut?

I'll take this backwards, the process of booking is probably the hardest to explain.

lastly, we have the physical process of the haircut itself.most of my major sensory issues are hair related; I hate the sensation of other people touching my hair in any way, I never use any hairstyling products, I won't open the car window while its moving. basically, the only things I do to my hair are wash it, brush it and take it for the occasional cut. I also wear glasses, which have to be removed meaning I can't see what's going on which, with the sensory stuff means I need to really trust the hairdresser (as this is the only time I can make a conscious choice about the way it looks).

previously, there's the communication issue. this can be split into 2 parts; the brief and the chat. loyalty to a single hairdresser generally makes it easier to explain what you want to look like afterwards (it's amazing how many ways there are to make hair look "a bit like it is, but shorter"), but  there is a downside when it comes to the chat. the chat always begins in the same way, with generic "so, what do you do?" type questions. I know that these chats are annoying for people of all neurotypes, I'm fairly sure they're for the hairdressers benefit, not mine. I'm willing to play along most of the time, and even try to do it back ("so, what made you choose to be a hairdresser?"). my real problem with the chat isn't that I'm annoyed at the small talk, it's that I'm failing spectacularly at becoming a functioning adult. the fact that I have a regular hairdresser means that, as I'm fairly distinctive, I get remembered. this means I don't get asked "so, what do you do?" but "so, hows the job hunt going/did you get a place on that course?", which changes the generic, mildly annoying hairdresser chatter into a stark reminder of all my major failures.

and firstly, there's the big one. the booking.the problem with the booking is the hardest to explain because it's linked to all the reasons I'm failing to become a productive member of society, and also because I'm not sure I understand why its so hard.

I have an...issue? a phobia? something with making phone calls, filling out forms or writing emails. I know it sounds like a really pathetic excuse for not doing things (it sounds even more pathetic from the inside), but every time I have to do one of these things I start to get anxious. I worry about what I'm going to say or write, then I tell myself "I'll do it later", then it's too late to call or I need some more information so I say "I'll do it tomorrow". eventually, I start feeling guilty for letting other people down. the guilt makes me feel even more anxious about getting it right (especially if there's a deadline). I need to get a job. any minimum wage, dead end, doesn't-even-need-to-be-full-time job would do, but I don't fill out the forms. I've given up even trying. I want to be an occupational therapist, but I didn't get a place on a course this year because of lack of experience. I need to get some voluntary work and arrange to shaddow some more OT sessions. I don't know why I haven't done that yet. as I'm writing this, there are 2 emails I should be answering; one from a university friend I haven't talked to since I graduated and one from someone impossibly awesome I met at bicon.

I don't know how common this issue is, but I have one friend at least who gets it completely. we don't have any contact for weeks or months, then one of us will get over our guilt at not making contact before, work out what to say and send the email.

on finding love...

this post is not about my failure to find a romantic partner, although that might make an interesting post (you'd be amazed at how many ways there are to fuck up a first message in online dating. so far I've had someone ask how I chose my sexuality, what do my genitals look like and will I marry them as, erm, they're "really into tall girls" as well as a few of the usual "hey, your hot! want 2 get 2 no me between the sheets" and the slightly confusing "where are you from? I mean originally?").

no, this is about a different kind of love and the unspoken insecurities that come with it.

the people who know me really well irl will know that I have some sensory issues, sensory processing issues, a needle phobia and a history of panic attacks. a few even know what the sensory issues are. luckily, these issues don't have a major affect on my life; I'm working hard on the sensory processing, needles and the triggers for my sensory issues are easy to avoid and the panic attacks are rare. still, I'm sometimes concerned about being a burden.

the problem is, I need help getting out of the panic attacks. I mean I really need help. if I don't have that help, the attack will just continue.

my worst ever panic attack happened at brighton pride a few years back. I'd just come out and a certain LFNT was messing with my head. I'm still not sure what happened there; he might've thought he was being helpful or he might have been hurting me for his own entertainment. it doesn't matter, anyway. I ended up on my own in walkabout and I started to hyperventilate. I couldn't stop. I couldn't call anyone because the phone networks always crash at pride (and anyway, the LFNT was the only one in my phonebook I was sure was in brighton). I was scared to get up incase I collapsed. I started getting pins & needles. I felt lightheadded and unreal. I couldn't move. I couldn't stay there forever. I needed to pee. I was scared I'd wet myself if it didn't end soon. I couldn't talk because I was hyperventilating. this went on for over an hour.

eventually, a group of straight women came in. they were celebrating a 30th birthday. one of them came over to help me. her name was lyndsay. she asked what was wrong and, with her talking and me writing my response in a text on my phone, she managed to calm me down. I know nothing about this woman, I never knew her surname or the name of her friend the birthday girl, but I don't know what would've happened to me without her help that day. thankyou lyndsay.

so, the point is "help" is really important during panic attacks, even though "help" really means something very simple. I just need to believe that whoever is helping me will stay there, by my side until it's over. if we're good friends, that just means a hug. that seems ridiculus. an hour hyperventilating because I didn't get a hug.

and thats where the insecurities come in. you see, to my friends who "have to deal with" my dysfunctional brain, it's no big deal. we hug as a greeting, to say goodbye, because one of us said something funny or sad, to say thankyou for a birthday present...

...but I know that this hug is a big deal. this hug stops me from getting trapped in a moment of desperation and fear. for this hug, I owe my sanity. we always make sure the small, tangible things balance out. if one of us buys a drink, the other one returns the favour later or next time. but I can never repay the real debt. the one that has nothing to do with money.

or can I? you see, the friend who helped me out of my last panic attack, the one who probably would be my best friend if that term didn't reek of bitchy tween girls? I know they've got their own dysfunctional brain to deal with. maybe I do some of the little, just-part-of-our-friendship things that have the potential to save them from their psycological emergencies. maybe.

if I do, then maybe they feel the same. thats why this is probably the last taboo of our relationship. theres just no point discussing it; we both know what the other one would say if we brought it up, and in the moments we doubt that truth we'd just think they were saying what we wanted to hear. so, here on the internet I'm going to say it anyway.

you bring joy to my life. I want to help you be as happy as possible. you don't owe me anything. I love you.

"you can't call her that! it sounds like that old boat."

if it were possible to live without a name, I'd do it tomorrow without hesitation.

I have many lables that I identify with very strongly, but I've never felt my name was part of that identity.

it's not about the name; no part of my name is offensive to me and I can't think of any that I might prefer, it's more the concept of names that bothers me.

my mum has explained how it was chosen. my last name is the name of all my male line ancestors, in the way that is customary in our culture. my first and middle names a result of a few strange ideas....

mum liked Harriet, but my dads name is harry. his brother is George and they had a dad George, a grandad George, an uncle George, a grandad harry, 3 uncles harry and a cousin harry. dad didn't want any more Harry's or George's.

so mum had to pick a different name. she wanted something that wouldn't get in the way, and that I might "look like". apparently names like Melissa or Jessica were "to pretty" for someone of my expected size. mum picked a traditional girls name that she thought was unusual. when I started school there were 3 of us in my year with the same name, so clearly not that unusual.

mum liked rose as a middle name, but dad and my aunt Ivy thought that with my 1st name that sounded too much like "Mary Rose", the Tudor shipwreck raised not long before (hence the title of this post - I can almost hear Ivy saying that). so she picked a new middle name.

apparently none of this could be decided before I was born; apparently they had to see me to make sure I looked like the chosen name. this seems quite bizarre to me. babies look like babies. specifically, new born babies look like the offspring of Winston Churchill and some sort of reptile (they also scream like they know they look like this, and are very angry about it). yes, I know the hormones kick in and when the time comes I'm going to fall madly in love with my screaming Churchill lizard creature, I just don't see how they might look more like one name than another.

so there we have it. before I was even really me, I was assigned a 3 part lable based on compromises, daft assumptions and my male line ancestry. I don't like or hate it, I just feel it's irrelevant to who I am. I have a name and I have a national insurance number. both are useful to have, neither mean me.

so, what about my own reptilian wartime prime ministers? how will I choose their arbitrary social admin lables? well, the surname depends on my partner. if they especially want theirs to continue, fine. ideally, I'd like us both to pick 2 other surnames from our recent ancestry, assign each of the 6 names a number (my current surname, theirs + the 2 we each chose) and roll a dice.

as for first & middle names, I want to minimise any difficulties in the social admin and, if possible, give them a sense of belonging. in my family, we have a history of specific learning difficulties, so this means short names with no lower case b,d,p or q. I think Nina or Amy for girl lizards, Luke or Jack for boy lizards. I like the weird relatives idea of using the grandparents names as middle names.

Empathy, the great social delusion.

The oxford dictionary online defines empathy as ‘the ability to understand and share the feelings of another’. After many years of self aware observation, I've come to some conclusions about empathy. I'll try to illustrate these conclusions with a description of a scenario, as viewed from inside my head.

I'm sitting in a coffee shop at a train station (I'm not, I'm at home writing this on my laptop, but we'll go with this scenario to illustrate my point). I'm waiting to meet a friend. the seat is hard and the cappuccino I bought for the right to sit on it is getting cold.

How do you think I'm feeling? it probably seems obvious, right?

I've already been here 25 minutes. I don't expect my friend to get here for at least another 10, we'll still have plenty of time if they arrive in 15. Our train isn't even on the departures board yet. I know this, but I still keep checking my watch, my phone, the departures board, my ticket, the station clock. I keep running through all the ways I might've got this wrong. Did I book the tickets for the right day? Is that day today? Does my friend know that? Did I make a mistake translating 12hr/24hr time? Am I sure I'm not looking at the arrivals board?

How about now? Has your perception changed?

I answer my own questions and try to calm down. It's the departures board, not the arrivals; it says departures right there. +/- 12 hours isn't complicated, but I'll check again. Of course they know, they'll be here soon. Yes, I've checked enough times. I take a deep breath, adjust my headphones and focus on the sketch pad in front of me.

Do I still sound crazy? Well...

My headphones are the little black ear-plug style ones I've had since I was 12. The ear parts are still covered in the neon yellow nail varnish that seemed like a good idea a decade ago, but they're still in full working order. That is, they would be in full working order if I plugged them into a compatible electronic device. As it is, the business end is tied around a belt loop and tucked into an otherwise empty pocket of my jeans. The music I'm swaying to is actually all in my head; the headphones just stop people staring as much (plus I find the sensation of the plugs and the slightly muted station sounds soothing). I'm also not sketching my surroundings, I'm zentangling.

Still here? Well done, I promise I'll get to the point soon.

In the above scenario, I'm buzzing. My obsessive checking is to deal with my natural lack of time sense and organisation and, while it does cause some stress, mostly adds to the excitement of the journey. But that's not really the point.

If I wrote it correctly, anyone reading the above scenario might have started empathising with the boredom they perceived in the first paragraph, mixed in with some frustration at my friend being late. On reading the second paragraph, this might shift to pity for what they perceive as my issues. After the third, maybe they're relived I don't seem as crazy and, after the last paragraph, they probably don't know what to think, but I'm probably back to "crazy". We all do this sort of thing, all the time. this is the illusion of empathy.

I believe that true empathy is impossible. to truly understand what another human is feeling, we have to know everything that is influencing their emotional state. This information is almost never available, so we fill in the blanks with our own experiences (for example, you might have inserted yourself and that friend of yours who's always late into the first paragraph of the above scenario). Most of the time, this works fine; the problem comes if we get more information.

If the information available is too much for us to fill in the blanks "cookie cutter style", most people don't know how to empathise, and so respond with pity. This can be seen above where I start describing my (actually fairly mild) anxiety issues. Suddenly, we go from "yeah, I know exactly how you feel" to "wtf? you poor thing! why is no one looking after you?" then, later on, maybe "meh, that's weird, but if you say you're OK...". The other common response in this situation is outright disbelief.

The first reaction is clearly not ‘understanding and sharing’ my feelings, but maybe I'm tricking the system. Maybe it's just an unusual experience and the concept of empathy is sound. Maybe, but...

... try thinking about it. has anyone ever expected you to feel differently about something? A relationship break up that seemed right to you, that others pitied you for? How about loosing a job? Or even not wanting to celebrate your birthday?

Clearly, then, empathy is not some sort of mystical, psychic connection between people; it's just the pretence that everyone feels exactly as you would in that situation. You don't "understand" or "share" anything. My pain is not your pain.

I understand all this, but I still superimpose my sensory issues on other people. I know it doesn't hurt most people if you stroke their hair, but I still "empathise" when I see this happening. I suppose we can't avoid the social delusion.

"Extreme Love" v. self love

I recently watched a documentary on BBC iplayer called "Louis Theroux - Extreme Love - 1. Autism". I'd like to say it was a heart warming, sensitive programme about individual families struggling with autism, but ultimately succeeding because of the power of their love. alternatively, I'd also be happy to say it was deeply insulting to anyone on the autistic spectrum, that it demonised the "low functioning" while erasing the "high functioning". my real opinion is...complicated.

a big part of what makes it complicated is Justin. Justin is probably the "highest functioning" of all the autistic individuals we meet in the documentary, but I'll come back to him.

first, I'd like to explain the perspective that I have. I'm a "high functioning", officially diagnosed, anti-cure female autistic. I use quotation marks when describing levels of functioning because I find the LFA/HFA divide unhelpful on both a practical and an ideological level. it is based primarily on an individuals perceived capacity for verbal communication which, while it is a major part of many autistic peoples personal struggle, does not define anyone's experience (for example, one mother in the documentary mentions that her son is considered severe, but shows fewer problem behaviours in class than his more verbal peers). verbal communication is also not constant; a child who doesn't say their first word till after their 5th birthday might become fluent in 2 or more languages later on, and even the most "high functioning" autistic adult can be rendered completely non-verbal by sensory overload. the LFA/HFA divide also allows the NT community to ignore autistic self advocates by either demonising or infantalising the "low functioning", while invalidating the "high functioning" autistic experience. ideologically, I don't see a difference between self- and officially diagnosed autistics, but I mention my diagnostic status so that it might be slightly harder for anyone reading this to dismiss my perspective.

so, back to the documentary. the first thing to note (when watching from the autistic perspective) is how the adults seem to ignore signals from the autistic children. at one point Justin is clearly becoming stressed by Louis, who is asking questions that Justin a) can't answer and b) can't clearly articulate why he can't answer. Justin's mum tells Louis that he's becoming overloaded as if Justin isn't even there, which just adds to the problem. adults talking about the autistic children as if they're not there is a running theme not only in this documentary, but in the majority of documentaries about autism. I suppose it's because they assume anyone who can't talk must be unable to understand language. I'm non-verbal during panic attacks and unable to use any form of language-based communication during meltdowns, but I can still understand everything that is said to me or near me (and, during panic attacks, I can type, text, write or finger spell). I see no reason to assume that  permanently non-verbal (or currently pre-verbal) autistics can't understand what's being said around them.

most of the parents also seem to deal with meltdowns as if they are just bad behaviour. they are consciously aware of the difference, that their children are stressed by routine changes or sensory overload, but they shout at them in the same way they'd shout at NT children who were demanding sweets. this is just as difficult to watch as talking about the children in front of them, but the solution is much less clear cut. as an adult autistic, I don't know what I would do to deal with that kind of situation, and saying that the way many people deal with it is "not the best way" without offering any suggestions for how to do it better doesn't help anyone. the parents also have other things to consider alongside the psychological well being of their autistic child, including that child's physical safety and the physical & psychological effect on other family members including themselves and are, generally, already very stressed by juggling these concerns.

returning to the main point of this blog; Justin.

we meet Justin when he's preparing to leave the specialised autistic school that the documentary is based around. he lives at home with his mum, twin sister and several brothers (I forget how many brothers, we don't meet them) (all NT). he writes, and proudly shows Louis some home written foreign language dictionaries and a novel. he is anxious about leaving the school, but deeply frustrated by many of his fellow students so, in that way, he can't wait to go.

I felt I could relate to a lot of what Justin did and talked about. we both got very angry when people at school took the piss, and when Justin is called into the office for threatening another student, they use the patronising "remember the strategies we talked about before?" tone that I remember so well. Justin reeled off a list of 5 such strategies that had been given by the staff on previous occasions, such as try to ignore them, tell the teacher, move away from the person... all things that sound great in theory but don't work in practise. ignoring them translates as "pretend there's no problem till you explode", while the other suggestions would, in practise, be more likely to get Justin into trouble for being disruptive than actually solve the problem, especially if he's already wasted time trying to ignore them and now has to move away without explaining himself or get the teacher's attention immediately before reaching snapping point. Justin says he tried to deal with it, he tried 4/5 staff-approved strategies, he couldn't ignore it, the other student wouldn't stop & followed him when he moved, the teacher did nothing. they change the subject and tell him he won't be able to get away with that at the new school.

when Justin gets home, his mum says exactly the same thing, but adds that if he threatens to stab anyone outside of school he could get arrested. Justin claims to not believe her but, in a way, it doesn't matter if he believes it, or even if it's true or not. the message is the same. what he feels is unacceptable. there is no way he can express it, the suggested coping strategies don't help, he just has to stop feeling that way or keep on getting into worse trouble. he almost certainly believes his mum, but he can't see a way out. like many young people on the spectrum, Justin has very little social contact outside of school and family, so this condemnation from mum & school leaves him completely isolated, feeling like the whole world is against him.

another aspect of Justin's story that was difficult to watch was the way he'd internalised many of the prejudices felt by the adults in his life. these prejudices are usually expressed unwittingly by well meaning professionals and parents, but are essentially that autistic people are less human than NTs, and that the value of an autistic person relates to how "high functioning" they are. when Louis asks Justin's mum  about his diagnosis and, when she says he was diagnosed as severe to start with, he talks over her about how much better he is now. he's proud that he can now be seen as a real person, and he wants to make sure everyone can see he's not "low functioning" any more. later, at school, Justin says a fellow student is "throwing a hissy fit". the event is not shown on screen, but it is almost certainly an autistic meltdown. as we know, autistic meltdowns happen when the mind is overloaded, either by a change of routine or too much sensory stimulation. if he thought about it, Justin would know it too. the problem is that it's much easier to distance himself from his fellow autistic students than it would be to confront this prejudice in the adults.

this internalised prejudice is something I really struggle to deal with, both in my own mind and when I see it in others. I am, in many ways much "higher functioning" than Justin. if you met me on the street, I could probably pass for NT with very little trouble. my sensory issues are mild or easily avoided, I don't need routines, I can chose not to stim, and it's easy to pretend. easy, but not right. I'm not NT, or some sort of strange psychological half-and-half, I'm autistic. I don't want to be NT, and the only way for people like me to make life easier for kids on the spectrum is to be ourselves, out, loud & proud. I know what to do but I am weak, and that was the worst part of watching the programme.

Dyslexia, Depression & OCD

"that's *SO* depressing",

"yeah, he's really OCD about that",

"oops, sorry, I just had a dyslexic moment.how do you spell that again?"

Have you ever heard any of these phrases? Have you ever said any of them? Most people have casually said something similar.

Last night I was watching the million pound drop live with my mum and during the show Davina used 2 of these terms quite casually, at one point describing one of the contestants as "OCD" for stacking the bundles of cash neatly. Later in the game, she reassures the couple after a big drop, saying "I know it's really depressing, but..."

I'm not sure what it is about these 3 conditions, there are plenty of other invisible disabilities but, somehow, in the public mind these 3 are "fair game". If someone said that they felt a bit anorexic, epileptic or HIV positive today, would we be as quick to accept it? Probably not. But these conditions are just as invisible and, as far as I can tell, just as misunderstood by the majority of people. They also seem to be just as well known. The same could be said of Diabetes, Cancer or a whole list of other conditions.

I know that when most people say these things, they don't mean any harm; they just say it without thinking, because that's what everyone does, and, in a way, that's the point. By saying your partner is OCD because they like the house to be tidy, in a conversation with your friend on the bus, you are perpetuating the idea that the very real psychological condition OCD is really just a fancy medical label for people who like to be tidy. you're reinforcing this idea, not only in your own mind and the mind of your friend, but in the minds of all the other passengers on the bus. and that's assuming that none of the people listening have OCD.

I don't have OCD, but I have been depressed. I know it's a lot more than the "feeling a bit sad" most people use it to describe.

Before I became depressed, I used to feel "down" sometimes in a way that I naively assumed must be like depression. At these times, if it became unbearable, I allowed my mind to drift towards the idea of ending it. When I thought about this, part of me would always scream NO. I thought of this as the compulsive gambler approach to living (can't quit when you're winning, can't quit while you're loosing. Yes, I know it's hypocritical of me to use addiction in this way in a post on this subject, but that really is the best way to explain it). I found that little voice that wanted to live so comforting, whatever crap I was feeling, life was still worth it.

After being diagnosed with depression, I tried the same thing. There was no little voice. I didn't even have the emotional energy to be scared about that. I wasn't scared or sad or angry, I just felt flat and tired and bored. I had no urge to do any craft activities, very little appetite and barely enough energy to get up in the morning.

My point is, these conditions are real. All of them can represent huge challenges to the people who have them and their families, challenges that often last a lifetime. Challenges that would be nearly impossible without the support of loved ones.

Returning to the example above, you don't know the other passengers. you don't know anything about their lives or their loved ones. If one of them has OCD, you're reminding them that the majority of people see their condition as a joke. If one of them has a loved one with OCD, you may be depriving that person of an ally. It's even possible that you don't know your friend as well as you thought. Would you feel comfortable discussing your mental health with all the friends you might gossip or bitch about your partner with?

The worst part of it is, because I know that most of the time OCD is mentioned the person isn't actually talking about OCD, I tend to assume that no one is. A few months back, a close friend said they had "some OCD tendencies". My initial thoughts were "yeah, whatever", but as they described their experiences I realised they were talking about OCD the psychological condition, not OCD the joke. It was only the politeness that stopped me expressing my initial reaction that allowed me to listen and be supportive. Without this, I would have dismissed my friend completely, and they would have felt alone.

I'm not a bad person, and I have a better understanding of an empathy for mental health issues than most people I meet. I was talking to a friend I've known for several years, who I care about very deeply, yet because these 3 conditions are so commonly treated as a joke, I almost dismissed my friend at their most vulnerable.

I know "everyone" does it, I know no one can stop it happening, but if you, as an individual, stop using these conditions (or any other invisible disability) to describe normal, healthy personality traits, you at least won't be adding to the problem. if you pass on this message, maybe more people will stop perpetuating this idea, then, maybe, more people will feel able to discuss these issues with the people who really care about them. There will be just as many people with OCD, Dyslexia and Depression, but they would have better support networks and, hopefully, life will become easier. It's not much, I'm not asking for money or material goods, just a bit more understanding and thought in the way you interact with people.

No, your boyfriend's not OCD, but his tidiness drives you crazy, you're not having a dyslexic moment, you made a spelling mistake, and, no, that film wasn't depressing, it was bleak.

intro: socks and other aspects of life

hi,

I just started this blog for things. lots of things.

Things that I need to write down so that I can make sense of them,

things that I understand completely, but wish I could shout about in the physical world,

things that I have tried shouting about already,

or just things that wisper to me when I'm in the bath.

The name comes from a book about the stupidity of war, the limitations of gender roles and socks (mainly socks), but I'm easily confused by knitting and not that interested in war, so these things are unlikely to play a major role in the blog. Expect rants about prejudice with the occasional craft project.