A little (but important) Q&A

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Since my last post I have had a couple of questions in my blog comments which I thought I would answer in a blog post:

Are you autistic, I thought you had SPD?

Okay so here’s the thing. I was diagnosed with Sensory Processing Disorder (SPD) aged 8.

Over the years I think I have slowly come to the realisation that I might be autistic as I have a lot of little traits and sort of signs that point towards it. Many autistic people struggle with sensory issues but I’d never really thought about it the other way round – what if people (like me) with sensory issues actually sit somewhere on the autistic spectrum…?

Here are some traits that I or others have noticed in myself:

  • I have a very literal understanding of language and find jokes and sarcasm hard to understand.
  • The world can seem a very unpredictable and confusing place and I prefer to have a daily routine so I know what to expect each day. I hate change / new things and always react badly to them. I can cope better if I can prepare for changes in advance. For example: I would happily eat the same things everyday if I could and I always found it difficult to move from one school to another and onto university.
  • I find holidays or anytime off work very difficult and upsetting. I have to make routines and to-do lists to form a sort of schedule to live from.
  • I experience over sensitivity to sounds, touch, tastes, smells, light, colours, temperatures and pain. This is referred to as sensory sensitivity.
  • I am often unable to understand and express my own needs and become upset and overwhelmed very easily.
  • Autistic people often have repetitive and restricted interests. I find I am specifically drawn to (and love) police/crime/medical documentaries and TV shows (I even did my uni dissertation on UK policing!).
  • I seek out time alone when overloaded by other people. I find social situations an absolute nightmare. I try desperately to fit in and have a ‘fight or flight’ reaction to them.

(This list goes on and I have left off some more private/personal problems I struggle with that I am not comfortable listing on the internet!)

I have recently seen a psychologist who believes I am autistic and that I do have autistic traits. She feels I would sit somewhere on the autistic spectrum and encouraged me to go forward for a formal diagnosis. I have recently been contemplating whether it would be beneficial or not for me to be assessed but as the NHS waiting list is months long I would have to pay privately for this.

There are a lot of self-diagnosed autistic people out there. And I think for the time being I might be one of them. Autism really sums up my difficulties well into one easy to say ‘label’. I realise this may sound bad, but I don’t want it to come across that way.  Saying ‘I am autistic’ really helps me to explain my difficulties to other people quickly without explaining all my sensory and daily living problems.

Hi. Do you think you could do a post on occupational therapy? 🙂

Of course! Sorry if it seems like I’m rambling:

I’ve tried lots of different therapies such as Cognitive Behavioural Therapy (CBT) and therapy sessions with CAMHS (child and adolescent mental health service, NHS, UK) however I found these unhelpful and these made me feel worse. I have found Occupational Therapy (OT) to be the most helpful form of therapy.

The main problem I find is that UK doctors are not very clued up when it comes to sensory problems. This is a real shame – although some doctors are fab. I was referred to an Occupational Therapist as a child which was when I was diagnosed as having SPD. OT referrals are only offered to babies and young children in the UK and the service seems to stop as soon as you get any older. Once you are a teen/young adult/adult you only seem to be offered talking therapies like CBT.

I have seen an OT privately before (although this can be expensive it was definitely beneficial). The main thing my Occupational Therapist taught me when I was a child were fine motor skills like being able to cut with scissors, grip a pen/pencil, etc.

However the main thing OT’s focus on is this: de-sensitisation. It’s all about slowly learning to de-sensitise yourself to sensations you find hard – like touch. I was taught about body brushing. I totally recommend looking up something called the Wilbarger Protocol (a form of Brushing Therapy) you can read about it here. It’s a brushing therapy that helps people desensitise their body (that you can do at home) – also the brush can be bought online through Amazon and isn’t expensive! You should ideally do this under the supervision of an OT to make sure you are using the right technique but these instructions are helpful if you want to try it out for yourself.

I used to find it incredibly difficult to brush my hair and teeth. Although I still absolutely hate brushing my teeth I am able to withstand the vibrating motion of an electric toothbrush in my hand which is great as I now my brush my teeth much better even if the sensation is still quite tricky. I am also able to brush my hair – I apply a firm/heavy amount of pressure which really helps me.

Also I totally recommend reading the book ‘Too Loud Too Bright Too Fast Too Tight’ by Sharon Heller

I recommend also looking up Sensory diets (and weighted blankets!) and reading my posts here about how these have helped me:

Do feel free to continue to ask questions in the comments of my blog and I will always try to answer them as best as I can. 

Documentary Review: Aspergers & Me

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A couple of weeks ago I sat down to watch a documentary called ‘Aspergers and Me’ and I found it very thought (and feeling) provoking. I wanted to write a little review of it here on my blog to share with others…

The documentary follows a man called Chris who happens to be a BBC wildlife presenter. So here’s a little introduction to him:

“For most of his life, broadcaster and naturalist Chris Packham didn’t tell anyone about the one thing that in many ways has defined his entire existence. Chris is autistic – he has Asperger’s Syndrome, which means he struggles in social situations, has difficulty with human relationships, and is, by his own admission, “a little bit weird”. (BBC Media Centre, 2017)

Like 700,000 or so others in the UK, Chris Packham is autistic – he has a developmental disability affecting how he relates to other people, and also how he experiences the world. Specifically he has Asperger’s syndrome. His documentary invites us inside his autistic world to try to show what it’s really like being him. He lives alone in the woods with his ‘best friend’ who is called Scratchy. Scratchy is THE CUTEST dog; but Chris also has a long-term partner, Charlotte, who discusses the problems Asperger’s creates in their relationship – she describes Chris as being sometimes “like an alien”.

Chris experiences the world in a very different way, with heightened senses that can be very overwhelming. He grew up at a time when little was known about autism. Chris wasn’t diagnosed with Asperger’s until he was in his 40’s.

However with todays modern and scientific advances new possibilities are being offered to treat his condition. In the documentary Chris travels to America to witness new and quite radical therapies that seem to offer the possibility of entirely eradicating autistic traits. On the flip side of this Chris also meets those who are challenging the idea that autistic people need to change in order to fit into society. He visits one of many special schools in the U.S where children undergo repeated behaviour modification, in order to try to make them more normal. This makes for uncomfortable viewing.

Chris continues his travels, this time to Silicon Valley, one of the places where people with autistic traits are making massive contributions. Tech companies are slowly breaking the stigma and learning about untapped talent of autistic people. These people who are considered and often referred to as weird, geeky or lonely are starting to run the world.

Chris ultimately explores the question of whether he’d ever want to be cured himself, or whether Asperger’s has helped make him who he is today…

Would he ever choose to be ‘normal’?

“I’m anything but normal,” he agrees, staring at the floor. “I experience the world in hyper-reality. Sensory overload is a constant distraction. I’ve just been for a walk in the woods, and it was very different for me than it would be for you – the sights, the smells, the sounds.” He frowns, and glances at his partner, 41-year-old Charlotte Corney. “But we need to go to the supermarket later, and I’ll do anything to get out of it because supermarkets are a swamping of the senses. The lighting is hideous, it’s crowded, and the complex of smells is overwhelming.”                                                   (Chris Packham, Radio Times, 2017)

He is very good at getting across some idea of what it’s like to have a brain that is different, the sensory overload he experiences, sounds, smells and tastes. But what if there was a way of taking away these autistic traits?

“If there were a cure for Asperger’s, I don’t know if I’d want it. Humanity has prospered because of people with autistic traits. Without them, we wouldn’t have put man on the Moon or be running software programs. If we wiped out all the autistic people on the planet, I don’t know how much longer the human race would last.” (Chris Packham, Radio Times, 2017)

That’s the key, Chris says: not trying to change people, but learning to better understand and adapting to accommodate them. And, with this awesome and insightful documentary, he is really doing something to help with that.

The documentary was first aired (UK) on BBC Two, Tuesday 17th October at 9pm.