Photo of Jamie & Lion

The personal site of Jamie Knight, a slightly autistic web developer, speaker and mountain biker who is never seen far from his plush sidekick Lion. View the Archive

Topics: Autism Development

How i manage anxiety and insecurity.

Tonight is a big challenge for me. I’m in the USA and I am spending the night alone.

I’m staying in a really lovely place, it’s a smart little apartment in Santa Clara It’s lovely. It’s on a secure development with 3 gates between me and the outside worlds. It’s lovely.

However, for whatever reason this scenario has kick my anxiety senses into high gear.

Here’s how I am dealing with it:

1: retreat to a close small place

I’ve setup base in the bathroom. It’s furthest from all the sensory inputs I don’t enjoy (air conditioning noise, bright windows, excessive mess) it also adds an extra locked door. One of the plushies i trust is also standing gaurd. Mostly because it helps me feel safer. I know it’s a toy but it works so im not discounting it.

The bathroom has no windows and has a low light level. So I have control over the lights. Cool, quite, controlled and secure. Perfect.

2: low input entertainment

Within the bathroom. I have moved all my favourite low input entertainment in with me. Top gear magazines, podcasts, audiobooks etc.

3: relaxing activity

I have also hopped into a warm bath. I rerun it every four or five hours once it goes cold. The baths help ease my tummy cramps (warm water is still more effective than drugs).

I also like the way a deep bath feels. It provides resistance to my movement and I really like how it feels to lie deep in the bath. Completely covered in water feels great. Relaxing and calming. Nothing feels like it’s disconnected. I know where my elbows are without looking.

4: contact

I’m keeping in continuous contact with my two friends currently in the U.S. Neither is all that far away, but staying in contact keeps me calm. They are both doing cool things (one is touring a wine place, the other is currently cooking pasta for dinner).

5: make space timetable

I have a big visual timetable on the wall here. When I started struggling I first retreated to the bedroom and cleared my timetable. I have re planned today’s activity into tomorrow and that means I know that I have time to manage the anxiety and not be late for work projects.

6: next steps.

From a place where I am feeling safer and calmer I am now planning my sleep. In about about an hours time (when my phone runs out of battery) I am going to watch some DR who in the lounge if I can. Then after that I will either start making some lego things or do some others focus activity (like coloring or coding) untill I feel sleepy. Once sleepy it’s time to figure out what feels best for sleeping.

So if you ever wondered how I deal with anxiety. Theres a rough outline of my day to day methods.

Published: 26 February 2015 | Categories: , Permalink

Reality of care.

Its been a rough month here. But ouf it has come something of a revalation for me.

Care and support for people with disabilities, needs to be independent from freinds and family.

Heres why.

1: Support the disabled person, support everyone.

I’ve been in receipt of support from my friends and my partner for years. The support was really good. My partner covered the day to day stuff, and my other friends helped with the more specialist things (for example, a friend of mine who is a legal type, helps me manage my post!).

The day to day support recently stopped, it was strained anyway. To support me, my partner sacraficed his social life. It was never going to work long term, with no social life and huge practical demands form me (and my poor health) the support relationship collapsed. Its a testiment to his love for me and values that he lasted so long. Were still very much partners but he is now free to move on.

The relationship collapsed because it mixed care and friendship in a way which was too much. It started to become guilt driven and forced.

I believe, that the care has to come from a third part. Because, if a third party supports someone with a disability is also frees thier friends and family to have decent lives of thier own. Right now, decent third party support would enable at least 5 people to have more freedom and less guilt in thier lives.

My friend will still be helping, the thid party support should (and hopefully will) take the baseline load. The day to day stuff.

2: With support, a disabled person can be themselves.

Soemhing i have learnt this last month is that “independence” is not about laundry and cooking.

Independence is about giving all people (disabled or not) autonomy of thier lives. A footing to succseed, While practical independence is important, independence via third parties is not a lesser thing.

If i live in supported living, but that enables me to earn enough to pay for my own support and in turn have high quality relationships with my friends then that is also independence. It has value.

What more, if this setup makes me happiers. Then its fine.

Independent and autonomy is choice over what works. The last time i lived in supported living it worked for me.

3: Need is not everything.

I think part of the issue with social care in the UK is is so underfunded or strained the idea of preference is ignored. Unless you absolutely “need” the services won’t help. Its crisis care or nothing.

Quality of life, preferences, hell being happy is just not important.

From my perspecitve, services go for what is cheapest. Not what is best. So for me, while my friend could help, then will force them too. When it breaks down, they will then deal with it via crisis management. the services have no interest in establishing something sustainable.

4: I have a right to be happy.

i have a right to be happy. If having a job will give me an income suitable to pay for support that keeps me happy its fine.

Its not lazyness, thats important. Its about value. If my value to the world is in making cool apps, building great things at the BBC and inventing stuff, then it would be a waste for me to instead spend half my resouces simply making sure i eat and have clothing to wear.

I would rather be a mostly verbal working person, than a non verbal person who just about manages to maintain “independence”. Using medication to control the panic attacks. I think thats the choice infront of me.

This is the journey i am going on. I have an income from my job, and i choose to spend it on enough support that i can cope. The bases may be autism, but i feel as though i have a choice.

For me that choice is to get support from third parties and to seek a different type of independence. Its really challenged my perception of my own worth and value. But i think its an important topic. So let me know what you think in the comments.

Published: 25 February 2015 | Categories: , Permalink

Days 1 & 2 in San Fransisco: Sensory Stuff

I flew too San Fransisco three days ago, so today is the start of my second full day in the USA. The flight was quite difficult, but we landed in once piece. So far so good.

Over the last few days, I have been really sensitive to sensory stuff. I’m having lots of fun (exploring the city a little, visiting a friend) buts it’s been rather overwhelming at times.

So, in no specific order, here are some of my observations.

Intense cleaners

So far in the USA I can almost constantly smell cleaning products. The rental car smells so strong I felt sick until we had run the air conditioning a bit. We guessed it’s because the car had been cleaned and then sat for a while. Its hard to know for sure, but the smell was very noticeable. Luckily, over time the smell is dropping.

Another strong smelling place has been the corridors leading to the apartment we are staying in. It smells similar to how hospitals in the UK smell. The lift smells less strong, but the smell is different. Whereas the corridors smell of “fake freshness” the lift smells a little minty.

Out and about I have also noticed smell more. Shops (like wall-greens etc) all smell of the same “fake freshness” smell and the place where we ate dinner yesterday smelled of cooking. I don’t mind the cooking smell, but even somehow that smell seemed a bit forced or fake.

Finally, there are a few smells I like. I REALLY like the clever electric buses as when they pass you can smell the electric motors. Reminds me of scalextrix cars.

Very loud.

San Francisco also seems to be very loud. The trams are really loud, but the general background level seems high. In shops the music seems much higher and in the street cars seem louder. We did wonder if its because the cars are bigger.

Even sat in the apartment, there is the noise of traffic outside. A huge 6 lane “expressway” is a few hundred meters away and the sound from it is very noticeable. For this trip, my ear defenders have been essential

Car headlights.

Perhaps its because i’m in san Francisco, but the cars all seems to have extremely bright headlights. We wondered if its because the cars a more modern or simply more cars have higher powered headlights. Looking out of the windscreen while driving at night is very difficult.

Adverts everywhere.

Driving around San Fransisco there are adverts everywhere, they can be extremely bright or visually “loud”. I’m amazed residents do not crash. Its quite remarkable. We went into a Safeway to do a shop, and the packaging seemed to use my stronger colours. In one aisle of the supermarket a wall of “stuff” filled my entire vision and felt endless. I have been taking my glasses off lots to try and reduce the overload. It makes British supermarkets seem minimal and visually restrained.

Roads

Finally, in San Fransisco there are loads of really amazing bridges and flyovers. They are really cool. What I find interesting is that the flyovers are rarely square. They swoop, and curve. Going up them in the car at 50mph feels like a roller-coaster.

So, a few days in these are my first impressions. Hopefully, over the next few days I will get use to the sights, smells and sounds.

Published: 23 February 2015 | Categories: Permalink

Older Articles