My Journey to my Autism Diagnosis

On Tuesday, March 29th, 2022, I was diagnosed with an Autism Spectrum Disorder by a Psychologist working in our great NHS.  A diagnosis of autism doesn’t come easy.  There are currently no blood tests, urine dips, or imaging techniques that can detect autism.

My journey started in August 2021 when I was hospitalised with COVID for a period of around 10 days.  The consultant treating me asked me one morning if I’d ever been assessed for an autism diagnosis, which I hadn’t.  Here I was, a 44-year-old man, with a long professional career, being asked if I had been assessed for a condition that I thought only affected kids.

The consultant put in a referral to the local autism assessment service and gave me a questionnaire which I now know was the AQ10 – Autism Quotient 10.  It’s a screening tool to see if a full assessment is warranted.  Out of the 10 questions, I scored 9, which shows that the person taking the test is highly likely to be autistic.  I also had a questionnaire for my mum to complete.

Having completed these questionnaires, they were posted back to the assessment service, and I waited.  Eventually, I received a phone call from the doctor at the assessment service with some more questions, and told me she would need to speak with my mum about what I was like as a child.  I gave her my mum’s phone number and waited again.

The call to my mum was made in January of 2022.  I was not made aware of what had been discussed, and at the time of writing, I have not received the report from the doctor.  I now know this was called an ADI-R which is a structured interview and took 2 hours.

Following this, I was called into the assessment service for a face-to-face appointment to carry out an assessment named ADOS-2 module 4, the ADOS assessment for adults who are fluent speakers.

At this appointment, I performed several tasks in front of 2 psychologists who observed me very closely.  During these tasks, the doctor with me attempted to spark a conversation and I don’t know how I did but I’ve never been one for small talk, it’s a struggle to hold a conversation unless it’s about a subject I know about.

One of the tasks was to tell a story and the doctor handed me a picture book full of frogs that fly on lily pads.  All I could do with that was tell the doctor what was happening on each page and noted the very precise times on the left-hand pages which were blank except for the times.

Another of the tasks was to choose some items from a bag of toys and tell a story using them.  At the time I’d just had a horrible car accident that involved a large bull in the middle of a dark country road and just around a bend.  As I rounded the bend, doing no more than around 30-40mph, I came into contact with the bull and he wrote the car off.  According to the ambulance crew, I was lucky to get out of the car alive.  Back to the assessment, the items I chose were a toy car, a pair of glasses, and something else, a large thing, to represent the bull. I re-told the story of my crash.

After all of this, I went home and waited a couple of weeks for a results appointment, which confirmed what I had suspected since the consultant at the hospital had asked me about autism.

At present, I’m waiting for the report from the assessment service.  This diagnosis has made sense of so much of my life.  Behaviours, meltdowns and shutdowns, masking, and over-sharing, which I’ve always done.

So, I’m autistic.  I’m with the camp that say it’s not a disability and is instead the way our brains are wired which is different from neurotypical people.

Coming to Terms With my Autism Diagnosis

Just over 2 weeks ago I was diagnosed as being autistic. While this wasn’t a huge surprise it still came as a shock. It also explained a lot of things in my life, things that have happened and my reactions to them, things I’ve done and times when I’ve misunderstood what’s going on.

Now I find myself wondering if some incidents in the past have been autism related. For example at work I’ve found myself shouting at my manager twice. Frustration turned into anger and while I knew at the time what was going on, I was powerless to stop it. It was as if I was a spectator. It also wasn’t me. I’m one of the most placid, calm people I know. Of course when those incidents occurred I didn’t know I was autistic.

I hate small talk. Whether in written messages such as emails or instant messages or verbally, I am rubbish at it. I’m also useless at starting a conversation, even with people I know well.

I can’t do subtext. I take everything literally and a former partner had to explain when she was joking or being sarcastic about something. This has a large impact on my life because neurotypicals tend to speak in subtext most of the time, never directly saying what they mean.

Another thing I have issues with is knowing how I feel. This applies to both physical feelings such as hunger, thirst and types of pain as well as emotions. I now know this is an autism thing called Alexithymia. It’s not a diagnosis in itself, it’s more of a symptom. This leads to problems when seeing a physician and they ask what type of pain I’m in; I can’t answer because I simply don’t know.

With the emotion thing, I don’t know how to explain how I feel if someone asks, so I always give the stock answer that I’m ok, even when I’m not, but can’t explain how I am actually feeling.

Eye contact is a very common symptom of autism, and it’s something that I struggle with, when I’m talking with someone face to face I tend to look over one of their shoulders instead of making direct eye contact, which is way too intimate.

I also get very anxious about having to change a routine or an arrangement, for example I have a morning routine and if I get anything in the wrong order it upsets me and makes me ver anxious. If arrangements/plans are changed it causes anxiety. Finally for now, I am rude. Let me explain; I don’t know when to enter a conversation and am tactless, I say things as I see them rather than skirting around the way neurotypicals do.

These are just some of the issues I have and now I have a name and a reason for those. It’s reassuring to know there are a lot of people going through the same issues themselves.

I’ve come to terms with my diagnosis. It is what it is and it makes me, me. Sometimes it causes problems in life but, on the flip side, it also enables me to see things that others miss, to see things differently with a unique perspective. I spot and remember car registration plates and can instantly recall when and where I’ve seen a particular car previously. This isn’t something I “do” as such, it just kinda happens automatically, or autistically, if you will.

Now that I know the cause of so many problems I’ve had in the past, I can move forward with that knowledge and hopefully understand more about my life.

Autism is part of me. My brain is wired differently to the majority of people and that’s ok. I think. I’m only 2 weeks in, I’ll have to come back and revisit this in 2 years maybe.

Why Then Barbara Met Alan Made Frances Ryan Cry

Powerful programme. I can think of a few people who should be tied to a chair and forced to watch it.
Even though the DDA of 1995 was superseded by the Equality Act of 2010 some employers, service providers, organisations etc still don’t “get it”

Same Difference

Before we even reach the opening titles of Then Barbara Met Alan – the BBC’s one-off drama depicting the fight for the 1995 Disability Discrimination Act (DDA), which aired on Monday night – Barbara has graffitied “piss on pity” on a bus stop and turned down going for a drink with Alan because, in her words, she’d just end up getting drunk and giving him a blowjob. It is an instruction to the audience from the off to reject their preconceptions: this is not disabled people as you might think.

The story of how disabled activists – led by Barbara Lisicki and Alan Holdsworth – used direct action to lobby for the UK’s first disability civil rights law is one you’d be forgiven for not having heard before. Disability history is not taught in schools. It is not dramatised for entertainment and is rarely the subject of documentaries; on…

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Matt Hancock and the NHS Rainbow Badge

Having seen Matt Hancock sporting an NHS rainbow badge on TV I wondered if he actually had any idea as to its origin or purpose, or whether he was just wearing it as rainbows have now become synonymous with the NHS?
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I couldn’t help wondering also if his wearing the badge and the proliferation of rainbows being used as a show of support for NHS staff might obstruct or dilute the actual purpose and message of the NHS rainbow badge scheme?

Some people are of the opinion, as seen here, that the rainbow badge is being used to denote or show solidarity for NHS staff who are part of the LGBT+ community or an ally, and whilst some of the staff wearing these badges may well be part of the community or allies, it’s important to remember that not all identify as being part of the LGBT+ community.

The NHS rainbow badge is a symbol that the NHS is an open, non-judgemental and inclusive place for people that identify as LGBT+ and that a badge-wearing member of NHS staff is a safe person to talk to for any patient or staff member to obtain support or advice on anything relating to LGBT+ matters.

The badge is a symbol that you can talk to NHS staff about who you are and how you feel. They will do their best to get support for you if you need it.

Initially the badges and the ability to talk, advise and support were aimed at young patients but anyone can talk to a badge-wearer in confidence and safety and in the knowledge that they will not be judged.

Badge-wearers are committed to a course of training and a pledge to provide unbiased, non-judgemental support to anyone identifying as LGBT+ before they are issued a badge.

For more info see the Evelina London page.  Home of the NHS rainbow badge.070220-NHS-rainbow-badge-scheme

 

DWP Loses Court Fight Over Treatment Of Severely Disabled

About time, though it won’t make any difference sadly.

Same Difference

The government has suffered a humiliating court defeat after it was found to have unlawfully discriminated against thousands of severely disabled people who were left financially worse off after moving on to universal credit.

The court of appeal dismissed a challenge by the Department for Work and Pensions to two previous high court decisions that protected claimants in receipt of severe disability premium against a drop in income under the new benefit.

The cases were brought by two disabled individuals, known as TP and AR, who had sought justice after their benefit income was reduced by £180 a month when they were required to claim universal credit after moving house into a different local authority area.

Responding to Wednesday’s decision, AR said: “We hope that the court of appeal ruling will finally bring an end to our fight for severely disabled people not to be disadvantaged by universal credit. It…

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Mesh? TVT? The Right to a Full Sex Life.

First time I’ve heard of this and it sounds horrific.

unextraordinarybint Samantha Harris in London, England.

Trans-vaginal tape is the term used to described the plastic mesh placed during bladder surgery. It is basically a strip of unfinished plastic mesh just like below. It is placed around the bladder in a special procedure using long needles and brute strength. 

TVT is usually implanted to help secure the bladder against leaks of urine, it is used as a sling between the pelvic bone cavities. It was ‘designed’ to support and lift. It cuts off the flow of blood, urine and feeling to the area depending on it’s position. The loss of flow is intermittent, so one can go from calm to complete groin spasm in milliseconds.

So this, one second it’s fine then spasm, starts an onset of unbearable urgency. It gets so unreliable that eventually you are either unable to urinate or can’t stop urinating! Also urination becomes extremely painful. It is a similar situation with…

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Family Faced £10K Bill To Move Away From Disabled Daughter’s Rapist

What planet are these people on?? And how on earth did a rapist end up next door to his victim?

Same Difference

A mother who discovered her disabled daughter’s rapist had moved next door was told she would have repay £10,000 to a council to leave her property.

Leicester City Council said modifications made to her home would incur a fee if the woman left within 10 years of the changes being made.

But the local government watchdog ruled against the council, adding it should apologise.

The council said it was a “complex case” and it had accepted the ruling.

In a report, the Local Government and Social Care Ombudsman (LGO) detailed that in 2012 Leicester City Council gave the woman a Disabled Facilities Grant of £24,000 for improvements to the home.

But later the woman, who with diagnosed with cancer, found out a man who had raped her disabled daughter had moved next door, the Local Democracy Reporting Service said.

The LGO said he had “lived away for a long time”…

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A Deaf Nurse On Discrimination In The NHS

Discrimination is still alive and well within the NHS…

Same Difference

Being deaf has never stopped me from doing anything; it’s other people who make it an issue.

Growing up, I knew I wanted to be independent and travel. Nursing kept presenting itself as a career option. I had a natural empathy for how people feel and knew what it was like to have to try and get clarity about things. I could see that it was an opportunity to make a difference.

Deafness throws up a lot of stuff about what you can hear and what you can do. As soon as you say the word “deaf”, you’re already locked into an unconscious bias, which is that we can’t hear so we must be stupid. One consultant didn’t want me on his ward because I had to make him stop when I needed to understand his instructions. He used to walk off ahead of me but if I can’t see…

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