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.

 

 

Autism – Life After Diagnosis

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The BBC is currently running a series called The A Word which is based around a little boy who has autism and his family’s struggle to come to terms with it. So far, his mother has struggled to come to terms with the diagnosis and while I can understand why some parents might feel like that – it wasn’t my experience..

Autism was suggested as a reason for his behaviour when he was 3 years old but prior to that we hadn’t considered it as an option. I knew very little about autism so I researched it and soon realised that he ticked all the boxes. One year later he was diagnosed.

The formal diagnosis came via a phone call. The pediatrician had told us unofficially that our son was autistic but she needed the full report before she could make it official and she was waiting on the speech therapist who hadn’t yet seen him in clinic. A change of plan on the day of his speech therapy appointment threw The Boy into a major meltdown to the point where the therapist was unable to work with him. As distressing as the meltdown was – we were quietly pleased that this would be going in her report. A few days later later the consultant phoned and gave us the official diagnosis of Autism Spectrum Disorder with Sensory Processing Disorder.

How did we feel?

Relief, mainly. We had concerns for the future, but what parent doesn’t? Before that I was more worried about him not receiving the diagnosis or having to wait because that meant he wouldn’t get the full support that he needed.

Having read a lot of blogs from autism parents it’s clear that we’ve been lucky. We’ve had no problems at all in getting an assessment, diagnosis and subsequently the right support. I know that many parents are not so lucky but each of us can only speak of our own experience as we find it.

Why Go For A Diagnosis?

Some people live their entire lives knowing they are autistic but never getting assessed formally. When you look at the figures for the amount of people in the UK who have autism, I would suggest that the actual figure is much higher. For some people, they know and it’s enough.

Early intervention makes a massive difference. The Boy copes in mainstream school with one to one support. Without it life would be very different. When I was a child, Leo Kanner’s narrow opinion of autism still influenced attitudes and my son would have been labelled a troublemaker and most likely expelled.

A diagnosis can:

  • Provide relief to the person and their family.
  • Allow access to services only available with a diagnosis.
  • Give better understanding of how to cope with any problems.
  • Provide access to financial support.

How To Get a Referral

Our journey was different to a lot of families as our son’s nursery manager approached us with the suggestion of autism. The child psychologist observed him at nursery and agreed that he should be assessed whereas most parents start with their GP. The one thing I would urge all parents to do is to document unusual behaviour when it happens and note what was happening prior to it.

If you suspect your child has autism:

  • Make an appointment with your GP. Prepare notes on what you want to say in order to get the most out of your ten minutes. If you feel you require a longer appointment, request one.
  • Keep a diary to log unusual behaviour.
  • Not all GPs understand autism. If you are not satisfied, ask to see another one. Trust your instinct!

Diagnosis and its Effect on the Family

Every parent/family reacts differently to diagnosis. For some it brings a sense of relief, for others they grieve for what they feel they have lost. It’s important to understand that your child is still the child that you’ve always loved. The only difference is now you understand that they have a condition and it’s down to you, with support, to ensure that they reach their potential in order to live their life to the fullest.

Siblings

Caring for an autistic child can be all consuming but you need to make time for your other children. Remember that autism affects the family as a whole.

Looking After Yourself

Caring for an autistic child can be mentally if not physically exhausting. It’s important to take time out for yourself in order to re-charge the batteries. Don’t be afraid to ask for support and accept it when it’s offered.

Talk

The one thing that’s kept me from going completely doolally is being able to talk about how I feel with other autism parents and sympathetic friends. Being able to talk (or type) things out can make all the difference in those low moments that we all experience. I’ve also phoned the NAS helpline a few times and they have been helpful and informative.

The helpline number is 0808 800 4104

Autism doesn’t begin with a diagnosis. It’s been there from the start and it will be there in the end but the right support can make all the difference. The difference in The Boy after three years of support is nothing short of amazing. He is loved and accepted for who he is because he goes to a wonderful school with people who care. More importantly, he is happy.

I gave some thought to potentially burdening him with a label but the benefits of diagnosis outweighed the negatives, especially with him being so young. Hopefully when he comes to leave school in twelve years time- having autism will no longer be an obstacle to employment thanks to programmes like Employable Me which highlighted how valuable an autistic person can be to the workplace when given a chance.

Ours is a relatively positive story but it’s not the case for everyone. There are some children whose autism is so severe that there is little hope of an independent life and that must be absolutely devastating for their parents to cope with. It certainly puts things in perspective for us. Life can be difficult but we know it could be a lot worse..

Life with an autistic child is an emotional roller coaster or at least that’s how I see it. There are highs and lows in every day. Sadness and joy. Hope and despair. Resignation and determination. Courage and fear.

But always there is love.

Sons, Sand & Sauvignon

 

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