Christmas and the Autistic Child

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Most children like Christmas right? For many on the autistic spectrum, Christmas is a stressful time of year. The inevitable changes to routine are enough to send some children spiralling into one meltdown after another..

Same for autistic parents.

The Boy’s anxiety has been climbing for weeks. As soon as things change at school his behaviour deteriorates. He’s on a VERY short fuse and the simplest of requests, like taking his coat off, has him throwing stuff and stomping off upstairs screaming that he wants to DIE. He’s eight going on thirteen only this is him BEFORE the hormones kick in!

Can you imagine when they do?

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Trip hazard? Or my son when the testosterone kicks in?

The Boy’s need for me is ever greater as he battles with a brain that struggles to cope with Christmas. He likes Christmas but struggles with it just as he struggles with a lot of other things he likes.

There are no decorations up at our house yet as we’re trying to keep stimulus to a minimum and my anxiety is so bad that the mere thought of them makes my heart race. The control freak within me struggles to allow other people to do it and in the past when I have let the kids, er, ‘help’, I have stood there fighting the urge to rugby tackle them to the floor in order to prise the baubles from their clammy little hands. *whispers* I re-did it once they were in bed. It’s something I don’t like about myself but it’s a pathological need for certain things to be aesthetically pleasing in my eyes.

When it comes to visiting Santa, forget it. It’s a sensory nightmare.

Queuing = Hell.

Noise = Hell.

Migraine inducing fairy lights = Hell

Sitting on Santa’s knee. Do they still do that? = Hell.

I hated it as a child. The Boy managed one minute in a queue once and we had to leave. Do your child and yourselves a favour and go to an autism friendly session where the visits are timed, you can take your own present. Visiting Santa should be a pleasant experience for every child, no?

There are things you can do as a non-deranged parent to make things a little easier for your autistic child.

Decorations

  • You can involve your child in buying decorations or letting them help you to put them up.
  • Introduce the decorations gradually. It’s probably best not to have it looking like Santa’s Grotto if your child gets easily overstimulated.
  • Give some thought to your Christmas lights. If your child is very sensitive, a migraine inducing strobe effect probably isn’t the best idea. Static or gentle fade in and fade out lights will be more appropriate.
  • Use countdowns for putting the decorations up and taking them down.
  • Use social stories and visual calendars.

Visiting Santa

  • Check your local papers/social media for autistic friendly Santa-sessions

Presents

  • Mountains of presents will overwhelm most autistic children so it’s best to limit how many they get or don’t put them all out on Christmas Day.
  • If your child has sensory issues pay attention to the paper you use to wrap the presents with.
  • If unwrapping make them anxious then don’t wrap them at all.
  • Place a familiar toy next to the new presents.
  • Try some gentle classical Christmas music in the background especially if classical soothes them normally.

Family

Don’t feel under pressure from your family. If you know your child can’t cope with a big family get together on Christmas Day, then don’t be afraid to tell them to sod off – albeit politely. Your child’s well-being has to come before Great Aunt Ada parking her arse on your sofa all day scoffing the Quality Street eh? Life is different when you have an autistic child. If people get it, great. If they don’t, educate them until they do get it. Maybe give them a book on understanding autism as a Christmas present?

Familiarity

Christmas Day is just the three of us. There are no visitors. There is no Christmas dinner with party hats and other such paraphernalia. The Boy has his usual food and bedtime is the usual time with the usual ritual of a story and his Classic FM.

The Rules are that there are NO rules when it comes to autism. Each person is different. Some love Christmas, some don’t. All autistic people are affected but not necessarily in a negative way.

Me? I find Christmas stressful BUT it’s also the season of fairy lights and I BLOODY LOVE fairy lights!!

As a child I used to lie on the floor under the Christmas tree and stare at them for hours on end. My Nan, having downed a few brandies, would say, “You’re a funny little girl” I used to wonder why she was calling me funny when I hadn’t said or done anything funny. Now I know she was calling me weird. MY OWN GRANDMOTHER!!

Christmas is difficult for me in ways which most people wouldn’t understand. I’m not a Christmas hater – it’s just that there is too much going on and that sends my anxiety orbital. Social media is crammed with Christmas. TV is bombarding us with adverts/mini-movies for the hard sell and it gives me a headache. If I could cherry pick bits of Christmas it would be lights, carols and the act of giving. You can keep the crowds, commercialism and my pet peeve, ‘Secret Santa’.

I don’t suppose it helps matters that my father decided to shuffle off his mortal coil on a Christmas Day. To lose someone you love on any day of the year is bad enough but to lose them on Christmas Day is epically crap. The image of Dad’s lifeless body while Noddy Holder screeched “IT’S CHRISSSSSSSTMAAAAAAAAAAAAAAAS” is forever seared into my memory and while I fight to bring forward the memories where he was the life and soul of Christmas, this one always wins.

As regards The Boy, we try to keep things as close to normal as is possible. Whatever ‘normal’ is.

Header Image via Creative Commons

 

 

Senses Working Overtime

I’m hypersensitive.

It means that I experience the world in an overly-sensitive way both physically and emotionally.

Hypertactile

For me, this means that I feel discomfort at the slightest touch – cue Five Starr with their MASSIVE shoulder pads. A hand on my arm can feel like a punch if I’m sensitised enough. Sometimes OH will touch my arm and I recoil as if I’ve been shot. I can see how this affects him but I’m unable to reassure him that it’s me, not him, because I struggle to verbalise how I feel.

I also can’t tolerate certain materials which are itchy and scratchy.

Aren’t they characters in the Simpsons?

Many of my clothes have ended up in charity bags due to them irritating the crap of me. Shoes, the same. I don’t like to feel as if I am wearing clothes, see. Sounds kinky, I know, but what I mean is that materials have to be soft and not constricting..

It’s been trial and error over the years. Like when I knitted myself a mohair jumper. I know, I’m an idiot, right? It took months to knit the bastard thing. I wore it once and chucked it straight in the charity bag because I itched like a dog with fleas. Lesson learned!

After decades of buying the wrong stuff, I’ve finally settled on leggings, tunic top and boots in Autumn/Winter and Spring/Summer is jeans, tee shirt and a pair of Converse hi-tops.

Not forgetting my beloved cardigans, one blue, one black, with pockets which I wear ALL YEAR ROUND!

Hypervision.

This means that I see what most people don’t. This can be annoying AND wonderful.

I see details that most people miss. This came in handy when I worked as a packer in a pharmaceuticals warehouse because I picked up on subtle differences in packaging, IE, counterfeiting.

It also means that fluorescent lights give me migraines, as does sunlight and the blue light emitted from computers and tablets.

Hyperhearing

I used to jump EVERY TIME the school bell went and without looking up I could tell which teacher had entered the room by the sound their shoes made. Some shoes were soft and and pleasing whereas others were squeaky and f**king annoying. My maths teacher in secondary school had a particularly irritating squeak in his right brogue and he was wearing the same pair when I left four years later..

Traffic also annoys me and don’t start me on emergency service sirens. On a good day they are LOUD. ON a bad day, hearing nee-nars makes me want to rip my ears off and sling them in someone’s privet. I also hear low level buzzing noises that nobody else can. Only thing is that since I developed tinnitus, it’s hard to work out what is actual buzzing and what isn’t..

I used to be able to hear a bee fart in the next street but over the years I’ve lost hearing in one ear. This is both good and bad. It means that the other ear over-compensates – which is disorientating. I do have a sexy hearing aid courtesy of the NHS but it amplifies sound too much and increases my sensory issues, so I hardly ever wear it, hence I say, “Eh?” and “What?” a lot.

On the other hand it helps when my tinnitus is giving me gyp.

The reason why autistic people have hearing sensitivity could be due to differences in the temporal lobe of the brain, which is the area that deals with auditory processing. Or it could be that responses are learned. I don’t think they know for sure why it happens..

By far, the biggest problem with my sensitivity is that I feel too much. Swiss researchers, Henry and Kamila Markram argue that the fundamental problem with Asperger’s is ‘hypersensitivity to experience’. Rather than people with Aspergers not feeling enough – the Markrams say that it’s actually the opposite and they feel too much. That’s definitely true of me. I’m both physically AND emotionally sensitive. Unkind words really hurt me. They scar me. You just can’t see them like a physical one.

If I see a homeless person lying in a doorway, I hurt for them. The down and outs. The underdogs. Life’s rejects. The weirdos. The persecuted. I hurt for them ALL. Emotionally I am a wreck of a human being and my sensitivity is the reason that I try and stay away from the news because I get overloaded with people’s pain. I know that most people see things on the news and feel empathy but it doesn’t haunt them forevermore. That’s the difference.

I HATE how people lie and deceive. To put your faith into someone only to be betrayed is soul destroying. Having been officially diagnosed as autistic, I understand how my vulnerabilities have been exploited over the years. People sense I’m different but they mistake silence for weakness.

Here’s the thing..

It’s NOT weakness.

Can you imagine how hard it is to exist in an increasingly sensory world?

To constantly feel that you have to adapt and camouflage yourself in order to fit in?

To live your entire life in a state of anxiety and having to make choices between everyday situations in order to lessen the stimulus?

To live like this EVERY SINGLE DAY takes strength my dears.

Neurotypical people do those things without thinking whereas I have to think about almost everything I do, even how to breathe when my anxiety is bad enough.

I guess that my problem is that I am just too sensitive for this world.

“You,” he said, “are a terribly real thing in a terribly false world, and that, I believe, is why you are in so much pain.” Emille Autumn ~ The Asylum For Wayward Victorian Girls.

Things People Say That Drive Autistic People NUTS!

You don’t look autistic.

Is autism supposed to have a look?

When a person says, ‘You don’t look autistic’, it’s fairly obvious they don’t have a blithering clue what autism is. Maybe they watched Rain Man and believe that every autistic person looks like Dustin Hoffman?

Or, that you should be wearing a skull guard helmet..

In all fairness, people probably think they are paying you a compliment (ish) but what they are actually doing is belittling the difficulties that you face on a daily basis. Also, in that person’s eyes it puts you above other autistic people (such as those who do wear protective head gear) because you can pass for ‘normal’ and they can’t.

Here’s the thing..

I don’t consider myself to be better (or less) than any other autistic person.

I don’t consider myself better (or less) than any neurotypical person.

We are all human beings.

You’re obviously high-functioning.

If by high functioning you mean I can speak, dress myself, take myself to the toilet and do housework? Yes, I can do those things.. However, to me, the term ‘highly functioning’ implies that I can do things WAY better than the average person.

A super functioner?

Where’s my cape and tights?!

Super strength? FUNCTIONING.

The reality is that a good day requires a LOT of effort and some days I struggle to function at all. When I am overwhelmed, I stop functioning aside the very basics needed to keep my family and myself alive. I shut down. I can’t speak. I can’t read beyond a single sentence. I can’t complete simple tasks like washing the dishes or folding laundry. My brain buffers, then freezes and it can take days for it to unravel itself. I have to spend hours on my own in order for this to happen.

Last night, I was in bed for 7pm.

I’m 47!

Would you say this is functioning highly?

What’s 97865 multiplied by 98?

Why do some people assume that autistic people are math geniuses?  I can’t stand the motherfudging subject!

My dislike (bordering on the pathological) of mathematics started in 1975 with the words ‘add and take away’.

I’ve been hyperventilating ever since..

I can give you the answer, but I’ll need a calculator.

In contrast, The Boy could recite his entire 12 times table at the age of 4. He likes maths – the weirdo.

What medication do you take for it?

I don’t take medication for my autism because it’s NOT A FARKING ILLNESS!!

I do, however, take medication for migraines, arthritis and the general aches and pains which comes from being an old fart.

Autism is an excuse for bad behaviour.

Autistic people don’t choose to have meltdowns.

They don’t wake up and think, ‘You know what? I REALLY fancy losing my shit today. Toast, anyone?’

It’s not a nice feeling to lose control, whether it manifests outwardly or internally. It is a reaction to overwhelming situations and having to use up so much energy trying to survive in an overwhelming world.

It’s EXTREME ANXIETY, not bad behaviour.

My sister’s friend’s brother is autistic. You’re nothing like him.

Firstly, I don’t have the necessary parts to be like your sister’s friend’s brother.

Secondly, no two autistic people are the same – just as no two NT people are the same.

Autistic people have similarities but all have different abilities and strengths. That said, we do share one thing in common, which is that each and every one of us is FABULOUSLY AWESOME!

You’re married, can hold down a job, have children. How can you do these things if you’re autistic?

With a great deal of effort, cocker.

I drive as well! Fancy that? An autistic person being let loose on the roads. QUELLE HORREUR!

P.S 25 + years of driving. No points. No parking tickets.

I also manage to drive AND lick the windscreen at the same time.

You’ve just been sarcastic. YOU CAN’T BE AUTISTIC!!!!!

I do irony too.

You’re a person with autism. You should use first language.

I am autistic. I am an autistic person. My autism defines me otherwise I wouldn’t be me.

Here, I can only speak for myself as some autistic people wouldn’t thank you for calling them autistic. They would be up in your face faster than you can fart. Having said that, the majority of autistic people use the term ‘autistic person’.

Incidentally, I saw a Facebook thread where the parent of an autistic teenager was having a mini-rant about people using the word ‘Aspie’ because it’s insulting, apparently.

The fact is that most people with Aspergers, refer to themselves as an Aspie.

I refer to myself as an Aspie but primarily I am an autistic person.

 

You can look me in the eye. You can’t be autistic!

Technically, I’m looking above your pupil but it’s such a subtle thing, you’re unlikely to be aware of it. As a child, I spent hours standing in the corner at school for being ‘rude’ and not looking at the teacher. I wasn’t EVER being rude. It distressed me to look people in the eye, so, technically, I was abused by every teacher who ever punished me for not doing it.

It’s taken decades for me to be able to maintain eye contact with people other than my immediate family and even now, when I am anxious, I will spend more time looking at your feet than your face. I have to remind myself to look up occasionally.

Yes, I can look you in the eye – sort of – and I am autistic.

 

 

It’s The Freakiest Show..

My big brother was into the 1970s glam-rock scene, I mean, he had the platforms and everything.. He looked a div, but then what teenage boy didn’t look a div in the 70s?

For what’s it’s worth, I also looked a div – only I didn’t have any choice in the matter.

Anyway, it’s from rooting through his records that I came across the phenomenon that was David Bowie..

Being born in 1970 rendered me too young to appreciate the glam rock scene first time around. However, I didn’t have to wait too long because it made a comeback in the 80s with the likes of Def Leppard, Poison and Kiss – only with less glitter and more hair. Oh. And the flares were replaced by skin-tight, testicle-trapping jeans which of course helped them to reach those high notes..

WHOOOOOOOOO-YEAHHHHHHHHHHHH

Of all the records of the glam rock era, Life on Mars is my favourite.

Bowie labeled Life on Mars, “a sensitive young girl’s reaction to the media” and added, “I think she finds herself disappointed with reality… that although she’s living in the doldrums of reality, she’s being told that there’s a far greater life somewhere, and she’s bitterly disappointed that she doesn’t have access to it.”

I know how she feels..

Reality sucks. You spend nine months in the womb being prepared for your big entry into the world only to reach the age of five when you start school and your world turns phenomenally crap.

Yes, I know how that girl feels..

Life on Mars was released as a single in 1973. I was three years old and still wearing plastic pants. So it’s fair to say that while I no doubt heard it on the radio (or saw it on TOTP) I wasn’t into it until a few years later..

First, I fell in love with Mick Ronson’s orchestral arrangement because, lets face it, it’s EFFING AWESOME! Then came my obsession with the lyrics (also awesome) and all these years later, it STILL does things to me insides..

When it comes to the lyrics, the song is somewhat ambiguous but I identify with Bowie’s description because, like the girl, I am also at odds with reality. I see life as one big freak show.

Sailors fighting in the dance hall
Oh man, look at those cavemen go
It’s the freakiest show

Bowie started out ordinary enough, apart from his freaky eye, but Mrs Bowie knew that his image was a bit crap so she turned him into the spiky red awesomeness that was ‘Ziggy Stardust’. He made weird, cool, and all the misfits and weirdos whooped with joy and bought all his records. He was like something out of space – which was kind of the idea. Nobody knew what the fuck he was. Was he male, female or alien?

Bowie wasn’t my dad’s cup of tea, as I imagine was the case with a lot of other parents of the time. Dad’s nervous cough would kick in when Ziggy beamed up via the gogglebox during those early years but he settled down once Dave brought out Lets Dance and ‘that one he did with Jagger’, got the Dad stamp of approval too.

Bowie has been a constant in some form or other since Ziggy. I almost had a coronary when the TV series Life on Mars was screened in 2006. Great plot. The legend what is ‘The Gene Genie’ (Gene Hunt) and a cracking 1970s soundtrack, including Life on Mars which was used a LOT. What’s not to like?

For those of you unfamiliar with Life on Mars.. the plot is is that Sam Tyler has an accident in 2006 and wakes up in 1973 wearing flares and driving a Cortina. The tagline is, Am I mad, in a coma, or back in time? Whatever’s happened, it’s like I’ve landed on a different planet.

I just hope to God I never suffer a head trauma and wake up in 1983 wearing a ra-ra skirt and legwarmers!

So, if I had to choose ONE song to listen to before I die, it would be Life On Mars. I want my life force to ebb away to this song but knowing my luck, it will be Justin Bieber and I will die with my middle finger stuck up in mid-air.

There is something satisfyingly poetic about Mick Ronson’s melodic string arrangements to Life on Mars being the last piece of music I ever hear before I depart this shit-hole planet. I am the girl with the mousey hair, or at least I used to be before I started dyeing the crap out of it, and I very much want this to be my swansong. Family, take note.

Finally, a bit o’ trivia for you..

The string arrangement for Life on Mars was written in a TOILET.

Genius.

Dancing With Myself

 

I have memories of dancing around the living room as a child. Even though I was (and still am) disturbingly uncoordinated – the freedom of movement was liberating. It didn’t matter that I looked like a div because nobody could see me.

Thing is, I am profoundly affected by music. Sounds wanky? Fair enough. However, it is a scientific fact that humans are hardwired to respond to music. Music is important. I mean, can you imagine films without soundtracks? Imagine Renton legging it down the street in Trainspotting without Iggy Pop’s Lust For Life. Or how about Jaws without the ‘duuun dun duuun dun dun dun dun dun dun dun’? Of course not. Films would be shit without music.

Life would be shit without music.

The Notorious G.O.D once said, ‘Yo knuckle-dragging peeps, 55,000 years from now your ancestors will be stressed off their tits and up to their eyeballs in something called ‘debt’ but they will have Coldplay and Radiohead.

Music was always playing in our house so many of my memories are evoked by songs. For instance, when I hear Ella Fitzgerald, I see Mum standing in the kitchen – pinny on – preparing Sunday dinner and it’s like she’s still with me somehow..

Mum ~ Circa 1975

As a teenager I went to a disco on Wednesday and Sunday nights.

YOU?!

Yes. ME!

Discos are usually avoided like the plague by the socially and sensory challenged. However, it was one of those situations where being social was a necessary evil if I wanted to experience music at a volume that would give my parents coronaries. You get this, right?

The routine was that I’d wake up on Wednesday morning (dry heaving) and I’d talk myself out of going. Then I’d get home from school – play my music – and it would give me a confidence injection. So I’d spend three hours faffing with my hair and troweling the make-up on and in the end I would look as far removed from me as I could be. Think actress and stage, rather than girl and disco..

Discos also meant BOYS.

I educated myself on how to be a girl and do boy/girl stuff because I was interested in boys, I just knew I couldn’t be myself or they would leg it faster than their Adidas trainers could carry them.

My research came in the form of teen magazines but the stories annoyed me because they were all ‘Wendy stared dreamily at Lee but he didn’t know she even existed. How could she get him to notice her?’. After a few pages of cringeworthy crap, Wendy gets a makeover at her mate’s house and Lee suddenly acknowledges her existence by snogging her in a graffiti filled bus stop which smells like a urinal. The end.

All this seemed ridiculous to me but apparently this was what was expected of girls if they wanted to attract boys? I did manage to attract a few boys because I remember kissing a random teenage lad to The Power of Love – Frankie Goes To Hollywood’s version. I don’t even think I knew his name before I started attacking his tonsils. Another lad (WHO WORE WHITE SLIP-ON SHOES FFS) bought me a Coke and I snogged him as a way of thanks. Snogging didn’t involve talking, you see. I understand that other female Aspies might identify with this?

Music was a drug to me and I needed my weekly fix of this ‘sound experience’. That’s an experience of sound – not Scouse lingo.

I was a disco junkie.

Sort of.

Because it wasn’t about the socialising. Nor did I need alcohol (not that they served it anyway being an under 18s disco) because I got my high from the bass sound which vibrated in my body. The anomaly is that loud noise usually affects me adversely. I cover my ears if a police car goes past. Loud music though? TURN IT UP!

Perhaps it’s no surprise that I have to wear a hearing aid now?

Anyway, combined with the lights (which fascinated me) I’d have been in heaven if it wasn’t for the other humans. My perfect disco? Just me, the music and lights. You can bugger the DJ right off too. I’ll pick my own tunes. Maybe that’s what my heaven will be? My own personal discotheque and yes, I AM old enough to remember the word, ‘discotheque’.

Spear of Destiny’s Liberator (Indie Rock) was played with full strobe light effects and I’d stand there with my mouth hanging open as if a UFO had just landed in the middle of the dance floor. Another anomaly is that, normally, lights affect me – especially fluorescent – but I LOVED THE STROBE! Couldn’t cope with it now (migraines) but in those days it just hyped me up with a similar effect as when you used to give kids E numbers..

The other thing about Liberator was that on hearing the intro, people would literally skid onto the dance floor and start jumping up and down like lunatics. You didn’t dance to Liberator. You shrugged your shoulders aggressively or swung your handbag round your head like a lasso. Plus, being in close proximity to other people meant you were always bumping into someone, like when I bumped into an older girl and demolished her glass of Coke. WHOOPS! Her mates helpfully inquired whether or not she was going to kick my face in?

‘I’M GOING TO KNOCK YOU OUT, COW!’, the girl informed me (aggressively) before flicking me the V sign.

She was probably all frosted lipstick and no action but I wasn’t in the mood to find out, so I legged it to the toilets as fast as my 6″ sling-backs would allow me..

At the end of the night, saliva would be swapped along with phone numbers. The lights would go on and the bouncers would start herding us towards the exits. To me, it was always a massive anti-climax to see the room devoid of it’s magic because the reality was that the dance floor was strewn with broken glass and fag-ends and it looked crap. It was like going to bed with Sean Bean and waking up with Worzel Gummidge. 😦

Once I got married and had children – going to a disco became a rarity. As life put more pressures on me, I became more and more unable to cope with social situations of any kind, let alone discos. I couldn’t recreate those years where the music would override my issues, so I stopped going. Once I was on my own, I would draw the curtains, put a record on and dance, or at least, my interpretation of dancing. Why do you think I drew the curtains?

I don’t remember exactly when I stopped dancing. I just know that I did. And now my bones are buggered so throwing myself around the living room is no longer an option. Not with my arthritis, dears. However, music is (and always will be) in my soul and the day I am no longer moved by it will be the day that I go to that great disco in the sky where the music never ends and God is a DJ.

That’s a reference to a song, by the way.

Until then, as Shannon once said, “Let the music play”.

“Ah, music,” he said, wiping his eyes. “A magic beyond all we do here!” ~ Dumbledore ~ Harry Potter & The Philosophers Stone

 

 

 

 

 

Hate Crime and Autism

Hate crime against autistic people happens because of ignorance and prejudice. I have a theory that some people only have to hear the world ‘autism’ and they immediately think of American high school massacres where the shooters happened to be autistic.

Take Adam Lanza (Sandy Hook) for example.

Obviously, what Lanza did was unforgivable – not to mention inexcusable – but here’s the thing: being autistic did NOT made him a murderer.

Adam Lanza allegedly had a mental illness that had gone untreated. He was also suffering from malnutrition as a result of anorexia. Malnutrition causes brain damage. He’d also been bullied, rejected and isolated for the majority of his school life. One of the most important factors of all? His gun enthusiast mother taught him to shoot at an early age and he had access to guns. This is one hell of a toxic mix, no? There are numerous factors as to why he became a mass murderer but the one thing that some people focus on is the fact that he was autistic.

The fact is that after the story about Adam Lanza broke, young autistic people were bullied, especially online.

This is how ignorant people can be.

The truth is that an autistic person is more likely to commit suicide (or be murdered by a family member) than mass murder.

Why do autistic people commit suicide?

“These are individuals who have been struggling all their lives to fit in,” “Along the way, they have really been suffering.” ~ Simon Baron-Cohen – professor of developmental psychopathology at the University of Cambridge in the U.K

Why? Because society won’t allow them to be themselves. Autistic people are put under enormous pressure to adapt to society in order to fit in and to conform.

Getting back to mass murder – most school ‘shooters’ are Caucasian males. So, if every autistic boy is a potential mass murderer, then this must mean that every Caucasian boy who goes to school is also potential mass murderer, right? Of course not. So why would people think that a child is likely to go off on a murderous spree just because they’re autistic?

Because they are f**king idiots, that’s why.

A mass murderer may well be autistic but that doesn’t mean that it’s the cause of the crime anymore than being Caucasian, having blue eyes or wearing a Nirvana tee shirt is.

“Correlation does not imply causation.”

One problem the autistic community has is irresponsible journalists mentioning mass murder and autistic in the same sentence. The two are linked together and what we have are ignorant people who think that just because a child is autistic – they are potential murderers. So when a boy is known to be autistic, what chance does he have? He’s autistic, therefore he’s a danger to all the NT kids?

My son is eight years old and he’s autistic. He’s one of the loveliest and kindest people I have ever known. He likes to make people laugh. His friends matter to him. When those friends reject him, it hurts him deeply and he can’t express that hurt in words, so he lashes out or he harms himself.

He’s not an angel. He can be rude. He can be grumpy but what 8/9 year old child isn’t?

Earlier this year he came home from school and he’d been having meltdowns. He had another one at home only this time he was self-harming – banging his head against the wall. We eventually learned that one of his friends had told him that they were forbidden to play with him. Why? Because he’d given this child some of his money to buy a snack. The child’s parents interpreted this as my son trying to ‘buy their child’s friendship’.

What?!

He doesn’t understand the concept of bribery.

He was being kind because he cared about his friend.

NEWSFLASH – autistic people do have empathy.

My son broke his heart in front of me.

“I hate myself, Mummy”

I don’t blame the child in question but I do hold the parents accountable for my son’s epic meltdown that day. I don’t know about you, but I would be absolutely mortified if I knew that a child had self-harmed because of something I’d said or done.

The depressing fact is that the leading cause of premature death in autistic people is suicide. If society changes their attitude towards us, that statistic will change. As an autistic person, I understand it. As the mother of an autistic boy – it terrifies me.

Research suggests that autistic boys (especially those with aspergers) from the age of 10 years up are more vulnerable to suicidal thoughts and attempts to take their own lives. Sadly, some succeed, like 11 year old Shane who killed himself as a result of being bullied because he was autistic.

Those who bullied him didn’t directly kill him but they abused him to the point that he felt life wasn’t worth living. It’s hate crime. They are accountable as far as I am concerned. Yet they are free to grow up and get on with their lives. Sound fair to you?

“Shane was a fighter. He made everyone he met happy. He put a smile on their faces. He was extremely intelligent in science, history and any type of animals and their habitats. He had a huge, loving heart (Tammy Laycock – Shane’s mother)

Going back to journalists..

Bethalto boy struggled with autism before killing himself.

Lets be clear here. This boy did not ‘struggle with autism’ before he killed himself. He struggled with how he was treated by staff and children at his school. Had they have treated him with the kindness and respect he deserved, do you honestly think he would have chosen to kill himself?

Autism didn’t kill this beautiful little boy. Prejudice, ignorance and intolerance killed him.

My son won’t become a statistic if I have anything to do with it. For me, the fight starts here. At 8 years of age he is unhappy because of the actions of a few people. The latest being an incident when we were verbally assaulted in the street. The tirade was aimed at me but it was about my son and he happened to be stood next to me listening to every word..

“Why don’t you have some self respect and remove him from school”

This coming from someone who was EPICALLY losing their shit in the street in front of their own child?

“Your son’s a bully”

Obviously I’m not supposed to get irony because I’m autistic (we do sarcasm too) but here is a person who is verbally abusing me and my son in the street and who is also making a concerted effort to get him kicked out of school because he’s ‘a bully’ despite there being no actual evidence for it.

He’s not a bully. He’s a vulnerable child.

So tell me. Who’s the bully?

I reported the incident to the police and the person got a caution and I’d do it again in a heartbeat.

My son isn’t Adam Lanza. Nor is any other autistic boy. I wish that people would educate themselves about autism instead of reading sensationalised news stories written by irresponsible journalists.

I will fight for my son’s right to live in this world free of fear because it’s his world too.

Because when it comes to my offspring I will fight with the fangs of a wolf and the claws of a dragon. And no one, or nothing will stop me from protecting them.

 

 

 

 

 

 

 

Big Mouth Strikes Again..

It isn’t often I climb aboard my soapbox but occasionally somebody pushes ALL my buttons and this week that person is Camilla Long.

Camilla writes for the Sunday Times. She’s also an expert on autism, or so she thinks..

On September 23rd, she tweeted this:

Firstly, Camilla is implying that you can tell if a person is autistic or not by how they look.

Secondly, she seems to be confusing autism with a disease.

Thirdly, she thinks she has the necessary qualifications to diagnose autism.

I am autistic and I do NOT ‘suffer’ with autism. However, I DO suffer with the uneducated opinions of Camilla and her ilk.

At the time of writing this post there are 470 comments in response to that tweet – mostly from an irate autistic community who have rightly taken offence to the statement, “An insult to real sufferers”.

@plannergeddon tweeted: I think it’s called spectrum for a reason.

‘Dr’ Long replied: “I think it’s bollocks”

No. What’s bollocks, Camilla, is people like you coming out with uneducated SHIT like that. You have 62’000 followers – some of whom will be stupid enough to take the drivel you write as fact.

When it comes to ‘suffering with autism’, I don’t ever recall saying to my OH,’ My autism isn’t half giving me gyp today. I’m really fucking suffering’.

I suffer with how people treat me because I’m different.

I suffer with anxiety caused by the stress of living in a neurotypical world.

I suffer because people can be utter arseholes at times.

I do not suffer with autism.

Autistic people are working hard to spread awareness of what’s it’s like to be autistic and ONLY autistic people can do that. If want to have a better understanding about autism, listen to autistic people. Don’t listen to idiots like Camilla who think that you can’t possibly be autistic unless you are Raymond Babbitt aka Rain Man.

To be clear, Camilla Long does NOT speak for me.

‘Dr’ Long is dismissive of Gary Numan being autistic. Why? Because he doesn’t have an official diagnosis.

Oh, well that’s that then! The voice of authority (not) has spoken.

Speaking to Autism Connect, Gary said: “I had some problems during my school years and, after many trips to a Child Psychologist, it was suggested that I had Asperger’s. I’ve never known for sure but I’ve always accepted that to be the case.”

“Some people seem concerned about it but I have always seen it as a positive thing. Yes, I’m somewhat awkward socially, but that seems a small price to pay for the advantages that come with Asperger’s.”

“I’m obsessive, but that’s a vital and useful trait for people in the music business. I’m driven and highly focused on things that I’m interested in, like my musical career.”

“A child psychiatrist at St Thomas’ Hospital in London suggested it might be Asperger’s. At 15, I was put on Valium and Nardil for about a year but as my mum hadn’t heard of the condition she thought the diagnosis was an insult to her parenting so we stopped seeing the psychiatrist and it was brushed under the carpet.”

An interview in The Guardian:

“I’m fine doing interviews and meeting fans because all I do then is talk about me but at functions where I have to talk to people about normal things, I’m rubbish.”

“The only downside is that I’m pretty awkward when interacting with strangers. I find being around a lot of people uncomfortable and I’m easily intimidated by the unpredictable nature of people.

“I often talk too much and I have a problem with eye contact. When I talk to people face-to-face I count how long I’ve been looking at their eyes so I know when to look away. It’s mechanical, not natural. There are a number of little things like that which I employ.”

If Gazza doesn’t have Aspergers, I’ll eat my diagnosis papers. WITH CHIPS!

Incidentally, Are Friends Electric was the first record I ever bought and it’s apt because most of my friends are online. I loved our Gary Numan and his face paint. I got that he was different (like me) and that it wasn’t all for show.

Gary is content to self-diagnose and self-diagnosis is valid. Often, just knowing that you are autistic is enough. I self-diagnosed for four years before I was referred for assessment. A DX is a professional validating what you already know. A diagnosis is important for children to be able to access support but when older people are diagnosed, they usually have a lifetime of coping skills behind them so there is little to be gained from official diagnosis. I know people who are self-diagnosed and they are happy to remain so. As far as I am concerned their experience is no less valid because they don’t have a piece of paper that says ASD or Aspergers Syndrome on it.

Gary knows he is autistic and that’s all that matters, NOT the opinion of some trumped-up columnist.

Camilla could have used her 62K following to educate people about autism but instead she chose to spread ignorance. The woman doesn’t even have a basic understanding of autism so who the chuff is she to decide who is or isn’t autistic?

I’ll close this post with one of my Twitter favorite responses to her tweet…

We are autistic. Not fucking “sufferers” Get back in your own lane and STFU until you’ve learnt something about autism – @andreadonstar

Hear hear!

 

 

 

 

 

 

 

I Dream of Sleep

I don’t remember when I last had a good night’s sleep. You know, the kind of sleep where you close your eyes and the next thing you know it’s morning?

I go off to sleep well enough, providing I don’t do anything too stimulating in the evening. For instance, I have found that if I write a blog post after 6pm, I am unable to switch off. I can lie in bed for three hours or more before I finally fall into an anxiety-filled sleep. Then I wake up at 4am, then 5, then six…

Sleep is vital to our well-being. We know that much and if our sleep is crap, we feel like crap. It’s that simple.

Anxiety sufferers know that a good night’s sleep is hard to come by. Medication may help in the short-term but it isn’t the long-term answer because it doesn’t address what is causing the insomnia in the first place.

When we have an anxiety disorder, we are in fight or flight mode 24/7. Adrenalin floods the body, mostly when we don’t want it to, like when we are trying to sleep or relax. The saber-toothed tiger is always there – ready to rip our throat out.

IT GONNA EAT YOU AND YOU GONNA DIE!!!!

Under these circumstances, maybe you can understand why a good night’s sleep is so elusive?

I dream but my dreams are funked up. It’s as if Quentin Tarantino lives in my head with creative input from Tim Burton and Alfred Hitchcock. However, there are a few things that we can do to improve our sleep.

Routine

Keep to a routine and try to be in bed the same time every night. Do like the old people do and be in bed by 10pm with a Horlicks and a copy of People’s Friend. OK, maybe not People’s Friend but some gentle reading. Remember, what you think about before you go to sleepyland, will affect your dreams…

Temperature

Try not to have your bedroom too warm or too cold.

For the menopausal insomniacs, you’ll just have to do your best, m’dears. Dangle a leg out of the bedclothes if you’re too hot and shove it back in when you get too cold. If your other half is emitting too much body heat in summer – roll the motherfungler off the bed and throw a pillow over his face to muffle his snores.

Exercise

Go for a run or walk the dog. Any exercise is better than nothing at all. However, it’s not a good idea to exercise in the evening because it’s too STIMULATING. Maybe a bit of gentle stretching?

Light

Try and have your boudoir as dark as is possible. Use blackout blinds if needs be. If all else fails, use a sleep mask.

Noise

If sounds annoy you, shove some earplugs in. If the silence annoys you, listen to some relaxation apps, like a nice calming waterfall. Just make sure to have a big wee before you go to bed, or you’ll be up and down to the toilet, which kind of defeats the object of getting a good night’s sleep.

Gadgets

Don’t take your phones. iPad’s, laptops and other electronic paraphernalia to bed with you. They all emit a blue light which tricks your brain into thinking it’s awake. Read a book or have a shag. If you live alone, shag yourself.

Sex is good because it releases relaxing hormones called endorphins, which is why blokes are snoring like warthogs within five minutes of eliminating their ‘man-milk’. You get me?

Diet

Drink six cans of Cola a day if you must but don’t complain when you’re buzzing like a frenzied bee at 3 o clock in the morning. Ditch the caffeine or make sure you only have one or two cups, max, and AVOID AVOID AVOID after about 3pm. There are some decent decaf options around. Fair dos, some taste like camel barf but if you shop around you are bound to find something that you can live with. I recommend a nice decaf Earl Grey.

Relaxation

Breathing exercises, meditation, progressive muscle relaxation, yoga, listening to classical music. It’s good practice to set aside some ‘you time’ each day.

Worrying

Don’t lie in bed worrying about paying bills or shit stuff like that. You’ll just drive yourself nuts. Tell yourself you will worry about them in the morning instead. Fill your frazzled mind with thoughts of stars, unicorns and moonbeams or just take yourself off for a walk along an imaginary beach. Imagine the waves gently rolling in and out. Then a sun-lounger magically appears in front of you. You throw yourself on it and doze off. THOSE are the kind of thoughts you want before bed. Not. ‘OMG, I DIDN’T PUT THE BINS OUT!!!’

If any of these tips work for you, let me know. Or maybe you have one or two of your own you’d like to share?

For a couple of months, I actually got my anxiety under control enough to be sleeping through. My dreams were still, er, weird, but I wasn’t waking up at silly-o-clock. But I’m a person who stops doing stuff as soon as I am feeling better. Mrs Knobhead, right?

Some people dream of holidays in the sun or winning the lottery. Me? I dream of having a good night’s sleep.

“I’ve always envied people who sleep easily. Their brains must be cleaner, the floorboards of the skull well swept, all the little monsters closed up in a steamer trunk at the foot of the bed.” ~ David Benioff, City of Thieves

Creative Commons Image Via Pixabay