How I Feel a Year After Getting Autism/Asperger’s Diagnosis as an Adult

It has been over a year that I was officially diagnosed with high functioning autism/Asperger’s Syndrome. Over this period, I have had high and low feelings about being autistic. I now think it is a good time to review how I felt about the whole process of coming to terms with being diagnosed with high functioning autism as an adult.

Being diagnosed

I had a suspicion I was high functioning autistic/Asperger’s even since I learnt about the condition several years ago. But it is one thing suspecting that I was autistic and another going through the process of getting a diagnosis. Then being told that my suspicions where true.

The whole diagnosis was a very difficult time for me. I had to get together proof, involve a number of family members and go through a number of interviews/meetings in order to help my clinical psychologist. So that she could get to the right or most accurate and truthful answer as to why I was different. It obviously included a lot of my difficult childhood and brought back many memories. As a private person, it was very invasive (which I knew it had to be) as I had to be as open, honest and as helpful as I possibly could be, to ensure my diagnosis was correct.

After waiting for over two years, since I started the process of being assessed by going to my GP, I finally had an answer. I was officially diagnosed with high function autism and in the category of Asperger’s Syndrome.

How I felt after being diagnosed

This was probably the hardest part for me. I first had to get over the whole process of being diagnosed and the difficulties it caused me of bringing up the past. Then had to come to terms with the fact that I am different to almost everyone in the world. Some of the differences were obvious to me but some were not. For example, I always knew I was sensitive to many things, such as bright light and had sensitive skin, but did not know this was related to autism.

Then I started to read up a bit on autism and Asperger’s and this really brought home all the difficulties I had faced in my life and the reasons why. I purposely chose to wait before reading too much information as I did not want it to influence my assessment in any way.

At first, and even today, I felt happy that I knew why I was different. I got the answers to the questions I thought I’d never be able to answer in my lifetime such as:

• Why I couldn’t handle change
• Why something simple such as talking to people was so difficult
• Why I was almost mute for my whole childhood and could never say even a few words to people who where not my family, even close family friends.
• Why I didn’t know my place in the world
• Why I didn’t like eye contact Why I found relationships with friends to be so difficult
• Why if I saw a friend in public I would purposely hide to try and avoid a social interaction
• Why I hated almost all social occasions and going out with friends to places like pubs and clubs
• Why good work colleagues/friends kindly offered for me to attend their birthday parties and weddings I had to decline because of how hard it would be for me.
• Why fitting in the work place was so difficult

But as comforting as the answer is, it didn’t solve my problem. I am different and I had to deal with this as I am going to be this way for my entire life. No matter how hard I try I will never be normal as my brain is different and can never be changed. Scary but true.

At first I started to be more me. Stuff the world. This is me and accept it. I don’t like eye contact so I not look at you when I talk. I don’t walk right so what, I not try to correct it any more. I find it to be too difficult to talk to people who I don’t know so I’m not even going to try. If you are not close to me and it’s not work related, I am not talking to you unless you talk to me. But I soon realised this is not the best way to be. Trying to fight against the world when you are in the small minority can only lead to unhappiness. I have to try, even if I can’t win. Small improvements are better than none.

After several months

I had spent years at looking at the negatives and looking at my weaknesses. I had spent a decade being over critical of my failings, especially in the area of poor success in my career. Knowing that it was autism and Asperger’s that had caused this. Knowing that my brain just does not work in the same way as almost every other human being. I realised that no matter what career and educational path I took I was destined to fail in the terms of accomplishing the expected level of achievement (career, family and standing in society). As my disability holds me back so severely that any level of academic success, knowledge and intelligence can only make up for this up to a certain point but never put me at the level that a neuro typical adult enjoys automatically.

I then had a revelation that against all the odds and all the barriers I have faced I have never stopped trying. I could have easily given up at many points in my life. I could have easily accepted who I am and been just me. But I have always fought and tried hard my whole life to become better. Just a few example are:

• To learn language and words as an adult by forcing myself to read for hours every day for almost two decades now. Even though at first I couldn’t understand anything and several books brought me to tears because it was so difficult for me to read and understand them but I kept doing it.
• To force myself to talk to people even though nearly all of my words where pronounced incorrectly. I often had to repeat myself serval times to be understood.
• To leave my job and go to university after having four years off from studying
• Against all the odds, nervousness, anxiety and difficulties do exceptionally well at university to get a first class honours
• Do a post grad teaching course and pass – even though it’s the last thing I should have done. I just saw it as one more impossible barrier that I was going to beat even though I knew it was going to be the most difficult thing I was ever going to do
• To teach as part of my course where I had to talk to people all day. Even though it was my biggest weakness; in my mind it was time to face my fears, fight and beat this thing.
• To gain a master’s degree, have a wife and two children, to live independently, to have almost a decade’s worth of experience at working in education
• The list goes on and on

I realised that what I had achieved should be something to be proud of. I’m in a low paid and fairly low skilled job but at least I am working and I mostly enjoy it. Things could certainly be much worse. I have had very small periods I my life when I was out of work and education and it was awful and I never want to go back to that.

How I feel now a year on

I am finally happy with my achievements. Now knowing it was my disability holding me back I am even more happy that I have achieved what I have and fought so hard my whole life to accomplish. I could achieve much more though. Whether this was a PhD, working in a higher paid job or working full time. But I am managing doing what I do so I am happy.

I could have pushed harder and achieved more and might have been more successful. In doing this though I am now certain it would have affected other areas in my life in a negative way. It would have caused tension in my family as I can only just about manage work and family life the way it is. So having more pressure would have certainly made me more stressed, unhappy, grumpy, feel anxious more often and have a negative outlook on life. All of which could have easily led to depression and would have put a massive strain on my relationship. My disability means I can really only put one thing first and I have chosen my family. If I chose a career or education I would have to give my all to this and almost do nothing at home apart from sleep, eat and recover. I would be excellent in my career but not have the time or energy to be a good father and husband. I have experienced deep depression in my adulthood and am probably over cautious with stress levels and workloads as a result but at least, for now, I am happy and managing.

Although I am happy, and it is very easy to just relax and keep things the same, I do want to achieve more. Perhaps it is human nature, educational conditioning or consumerism making me want to earn more money to buy more things in order to feel more successful or more secure. Perhaps it is wanting to please the close people around me that expect me to do better. Regardless of cause, I want to earn more money and have a higher paid job. I know any change needs to be gradual, whether it is slightly more hours or having a few hours at a second job.

I have also decided that I want to fit into society the best I can. I am fortunate enough that I can decide to try. Whereas many people with autism can only be the way they are and cannot change this. It won’t be easy, but it is something I have tried to do my whole life and I am not going to stop trying know. But again it has to be tiny steps over months and years and not massive leaps where I would be destined to fail and lose confidence.

Overall, for me, it was a good thing to be diagnosed. I think as much as it knocked my confidence in finding all of my weaknesses it is the only true way I can become stronger in the long run. People close to me can forgive me for some of my differences and are more understanding. In turn I can sometimes fight against my disability and do things that cause anxiety, stress, reduced confidence, lowers my self esteem or even causes pain and discomfort if it helps other people such as my close family. More than this, it helps me to realise why I find certain situations, environments and circumstances to be so difficult when to a normal person they are not. I can think to myself this is my Asperger’s and have an understanding of what is going on. I can then choose to either remove myself from the situation (some small insignificant things aren’t worth the fight) or try and fight against it, if it is something that it worth the battle I will have to give in order to gradually improve and eventually succeed.