It’s has been quite some time since I posted on this blog. It has certainly been a bit of a journey.
When I began this blog I was beginning to come to terms and investigate and discover if I was actually on the spectrum. The background of this was, in the shorter term having 2 children on the spectrum and having hints that this was the case given to me by my dear wife.
In other longer term background was the coming to terms with a life long struggle with social settings and how they work. I life long experience of missing the cues of saying things that made people uncomfortable or defensive. A school history of being bullied and having virtually no friends. A history of losing it and melting down over things that would hardly worry others. An adult history of not being able to hold a job for any length of time.
Oh but you don’t seem autistic to me! The refrain that is so unhelpful but did in fact help me to run from the idea and avoid asking the questions for quite some time. Well I began the journey back in 2013 when I was employed. It was a frustrating beginning to the journey. I contacted some Autism organisations to seek where to go for advice and was given little help at all other than a list of practitioners. I did however make contact with a psychologist who worked with my youngest daughter and asked her if she was able to help. She was able to point me in the direction of a clinician who could assess me.
At the time, I thought great, brilliant let’s get going on this. At the time I was gainfully employed and it all seemed easy enough to negotiate the cost factor of this process. However in between making appointments and having an appointment I managed to have a meltdown of sorts and lose my job.
There is no easy way to say this. It is cost prohibitive to actually pursue this process. There is no medicare coverage as an adult to get these answers. I went to the appointment had all the assessments done but was unable to pay the high costs straight away. I had to wait quite some time.
The big result of this was that I had the answer waiting. The answer was waiting but I had no way of getting the answer. In the mean time I participated in a sleep study for adults with autism or suspected of having autism and so went through some of the process again in the name of someone’s phd research. This was a positive experience and I had had some hope of getting some answers. I was able to gain some insight but not enough insight to really answer the questions that were burning. Mostly the question being am I on the spectrum. The end result of this research was well yes you might be, but you might not.
This brought me up to the middle of 2014. At around this time we were fortunate to receive some funds which my dear wife insisted on using part of to pay for my assessment. I guess she was just as keen to know the answer too.
In September last year I went with my wife to the follow up meeting and was told without hesitation that I was indeed on the spectrum. That I was in fact a very intelligent human person who was also on the Autistic Spectrum. Officially I am High Functioning Autistic. I asked the obvious question of would that be the same thing if it was on the old DSM and the answer was a little vague but that possibly I would have been officially Aspergers in that situation.
So here I am six months down the track. Six months of being identified as on the spectrum. Yes. On the spectrum is a phrase I seem to have had enter my vocabulary so much more often these days.
I guess I am still in the process of coming to terms with all this and what it means and where to from here. I go through waves of feelings with this. At times I am quite depressed. At times I am somewhat proud. At times I just don’t know what I am thinking and feeling about it and what it means.
Most recently I have been feeling quite down emotionally, feeling high levels of responsibility for my kids being on the spectrum, for my failure to support my family and for my failings to be a normal part of a family.
I am learning to not just accept but to be somewhat proud of being who I am. Of being a person on the spectrum and everything that goes with that. Where to from here seems to be the question of the moment. Learning to value the things that I bring and not consider myself a burden is a challenge.
I am challenged in my thinking about how there is so much focus on those of us who are on the spectrum to be socially taught to act Neurotypical as it were. To effectively pretend we are something that we are not. I just don’t see the real value in that as it is just a learning to pretend and act.
Well if you have made it this far through this naval gazing exercise, thanks for reading.