Welcome to Steve’s Aspie Adventures

Whether you are reading this as a parent, carer, friend or are on the spectrum yourself, a warm welcome to the blog and I’d welcome your comments. I was diagnosed with an autism spectrum condition as a teenager. Throughout my life this has brought unique challenges, deep lows but also very happy times. I hope with this blog I can share some of my experiences, challenges and successes with you. My hope is that it can help along the way at breaking down some of the fears, misconceptions, stereotypes that come hand in hand with Autism by giving an insight into what it’s like as an individual living with the condition.

At times when I’m affected most by my condition life can grind to a halt, but that has given me a drive to experience all I can when I’m feeling well. Travel brings a new perspective on life and the experiences it brings have made my good days even better and given hope in my bad days. For me it’s a metaphorical middle finger to a life-long condition. In my other blog (Roaming Steve) I share some stories of my travel and adventures.

I hope you enjoy reading this blog. Feel free to share this with your friends if you've found it helpful. I'd love to hear your thoughts, any topics you'd like to read about and own experiences so please comment or message me.

Please note, that in all my blog entries I can only relay my personal experiences and perspective. It is important to remember that every single person on the spectrum is an individual with a different story to mine. I have no medical expertise or training and am writing to share my personal experiences only.

Friday, 10 April 2015

Diagnosis Dilemmas - Q&A on autism diagnosis

Diagnosis is a topic that pretty much everyone on the spectrum has at some stage been affected by. Perhaps you were diagnosed as a child or as an adult, perhaps you have no formal diagnosis and feel it is something that you don't need or you want a diagnosis but really don't know what to expect from it.

This week I wanted to have a look at the topic of diagnoses in the form of a question and answer session.

Before I get started I just want to note that here in the UK the services offered vary wildly depending on where you live, my answers are based on my experiences alone. I'd love to hear your story, especially if you live in a different area or country. Feel free to add your views to the comments section.

How old were you when you were diagnosed with asperger's?

I've actually been diagnosed officially twice, so I've got two answers to this. The first diagnosis was when I was 16, or to be precise on my 16th Birthday. I was leaving full time school and it was clear to me that there was something going on for me that really needed addressing. I had terrible problems during my teenage years and the wishy-washy explanations I'd been given just didn't make sense to me. Finding myself on the brink of starting my adult life in such a vulnerable position spurred us into getting me a conclusive diagnosis. 12 years later I received a second diagnosis that matched the first. I had hit some difficulties at work and my line manager was refusing to accept that I was on the spectrum. She had dismissed the first diagnosis claiming that autism is a childhood thing (suggesting that I had grown out of it if it was even there to start with) and that I clearly didn't have it (she truly believed that those on the spectrum can't talk). Getting the re-diagnosis not only helped secure some adjustments to the working environment for me but also helped me re-confirm things for myself.

Why did you not get diagnosed as a child?

Diagnosis in childhood becoming far more common these days, but back in the early 80s when I arrived into this world it was fairly rare. In the years since far more research and knowledge is available allowing for much earlier diagnosis. For me the signs were missed and it was all the more autistic traits I displayed as a child were put down to things such as bad parenting / premature birth / bad behaviour / food additives etc, as I got older this moved onto almost random guesses at 'your son might have..... ADHD? / bereavement issues / ADD? etc' but at no point was any diagnosis offered. When an actual diagnosis was brought up it was generally considered that it shouldn't be offered as I might use it as a label to hide behind.

What did the diagnosis involve?

A series of tests are carried out ranging from a full IQ test to manual dexterity and problem solving tasks. There was an extensive series of questions relating to how I feel about various scenarios and a fairly long and invasive questionnaire relating to my behaviours and development as a child. The questions can feel quite intrusive and intimidating so I recommend taking time over the questions and asking someone close to help you out if you find you're struggling with them.

Following this diagnosis more in-depth testing and therapies often get offered. I've had follow up tests to manage the sensory processing aspect of autism, sensory integration therapy and various therapies to address meltdown management and social skills.

The National Autistic Society has a very comprensive guide on how to request and what to expect from an adult diagnosis for those in the UK at this link: http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx

I've not included any links to information about diagnoses in other countries or for children as I don't want to give you bad information as I don't know those areas very well myself - I welcome you to add any information you have that may be of use to others in the comments for others to see.

How did you feel about the diagnosis?

When I first received the diagnosis I was a bit shell-shocked. I remember having a typical teenage strop and telling my parents that it was a really crap 16th birthday present! I was given a list of things that I wouldn't be able to do because of the condition and really nothing positive was presented to me. Once the shock had passed it turned to relief. For a long time I had known there was something different about the way I was experiencing the world but having a reason why meant I could stop blaming myself and start to live my life, and I wanted to prove those who said I would never achieve anything wrong, I had mission!

What benefits has the diagnosis provided you?

There are two main benefits I have found from having an official diagnosis.

The first is a personal one. Having a piece of paper in my hand that conclusively proves that the struggles I've had are real and not just a weakness of character really helps me to overcome the pain of times things are bad. The diagnosis also provides me with a really useful tool to use to seek help, understanding why and how I'm struggling really gives me the key to figuring out what the solutions are.

The second benefit I have found is a purely practical one. By having a diagnosis I am officially classed in the UK as having a disability which automatically provides certain levels protection and support. It also opens up doors to getting specialist services, home support, treatments, advocacy etc, that are only offered to those with a diagnosis.

What disadvantages has the diagnosis given you?

None. I'm not saying this jokingly either, there really haven't been any disadvantages as such. The only negatives I could scrape from the barrel are that the process of actually getting one is frustrating and lengthy. Since getting the diagnosis it's only ever been beneficial for me.

The concern posed to me before my diagnosis was that it could be a label I could use to hide behind. In my experience it seems to actually work in reverse and having the label gives me more power and control over the struggles. To be fair if I was going to hide behind a label then I'm sure I would have found something to hide behind anyway and the effort in fighting for diagnosis would have been too much of an effort!

I've also heard often the concern that having a diagnose might disadvantage you if someone is prejudiced against those on the spectrum. In reality if you encounter small minded people like this then having the diagnosis legally protects you, actually in this situation not having the diagnosis would be the disadvantage. If I ever feel self-conscious or wary about disclosing my diagnosis then it's perfectly OK just to keep quiet and not tell anyone, having a diagnosis doesn't mean that I have to declare myself as an aspie to everyone I meet (although having a blog kinda does that for me!).

I suspect I am on the spectrum, would you suggest I get a diagnosis?

For me having a diagnosis has been a very positive thing but that doesn't mean I will be insisting everybody rushes to their doctors tomorrow for a test. There has been clear advantages for me in getting support as I often struggle but the process of diagnosis is frustrating and intrusive. I'd recommend assessing yourself if you feel a diagnosis is right for your own personal situation. I attend a support group in my local area that attracts many people both with diagnosis, self diagnosed and those just finding about the condition for themselves or someone they know. If you have questions about diagnosis groups like this and online support groups are a great way to chat things through with people who have gone through the process themselves. It's good to get a variety of views on the subject to help you make your own decisions.

I hope you've found this weeks topic interesting. As always I welcome your feedback and views. Please feel free to send me in your comments and questions below.

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