Hello. Am I in for a world of pain?

Hi Alex, I've never had an autistic child but I was one myself although I didn't know at the time. I have experienced the waiting list for myself as the person being diagnosed, and I can fully relate to the frustration although it is probably even harder for you trying to do all of the other parenting stuff whilst waiting for the long process to complete.

I want to say don't panic or be too despondent about the future for you and your son; autism affects people in so many different ways and your worst fears may not be realised and you will undoubtedly have many cherished moments and unexpected positive experiences too. My own children are not autistic, but that didn't stop them riding rough-shod over *my* ideas about what a parent would do with their children :-).

As with everything that challenges your expectations, it takes time to adjust and the classic change/grief/adjustment model will apply, so you can expect the usual stages of questioning and frustration and acceptance and readjustment in various guises and orders and strengths.

Writing a blog is an excellent idea if it works for you - I used one myself as I was coming to the realisation that I'm autistic, and I found that writing stuff down so that it would be comprehensible to someone else forced me to think through it clearly; and that seemed to be the key to the psychological evolution that was necessary.

Welcome to the forum and hopefully you'll find lots of the support that you need here.

Thank you so much. I agree - writing about it always helps bring more clarity, and I'm hoping it will help me to understand what to do better. Can I ask, if you don't mind, how was it growing up with autism? I ask this purely because I want to help understand what my son may experience. Were there frustrations? Did you feel people didn't understand you at times? Did you ever feel limited in any aspect of life? Alternatively, maybe you felt liberated with things that others felt limited with? Please do share your experiences. And as life goes on, do things change? I just want to know my child will be ok after I'm gone.

Thank you so much. I agree - writing about it always helps bring more clarity, and I'm hoping it will help me to understand what to do better. Can I ask, if you don't mind, how was it growing up with autism? I ask this purely because I want to help understand what my son may experience. Were there frustrations? Did you feel people didn't understand you at times? Did you ever feel limited in any aspect of life? Alternatively, maybe you felt liberated with things that others felt limited with? Please do share your experiences. And as life goes on, do things change? I just want to know my child will be ok after I'm gone.

So, keep in mind that I didn't know anything about autism when I was growing up, and what I'm describing about my childhood is specific to *my* childhood, and you can't really extrapolate to form a guide to childhood generally or autistic children generally.

I perceived myself as someone who preferred their own company, hadn't found many people suitable to be friends with, a bit of a geek, and not interested in fashion, music and sport like others were. I knew I had a higher IQ than average. This was my normal, and I had nothing to measure it against (I was an only child and lived in the countryside before mobile phones and internet).

Frustrations? Having very few people who wanted to talk about particle physics, and not having a girlfriend. The hardest part of my childhood was being bullied at school (the effect was psychological, not physical) and a kind of pervading sadness that I can't quite put my finger on, plus thinking that most people around me were quite silly.

I did feel quite liberated in that I found maths and physics interesting, fun, and quite easy - almost intuitive. 

Most people didn't understand the things I was interested in, so I kept quiet. I knew enough about people through experience not to try to have conversations about cosmology with my aunts and uncles. Hence my life was a bit lonely, but that's not as sad as it sounds because I preferred my own company to the alternatives on offer. I spent a lot of time thinking about and building electronic circuits - it kept my mind occupied, and provided an interest that drove me through university to get a B.Eng and PhD.

Life changes in innumerable ways as years and decades pass for sure, but I can't say much to predict what might be in store for your son as everyone is different and their circumstances are different.

At this point I stopped writing to read Tinyexplorer's reply and re-read your original post, and I think Tinyexplorer summed up very succinctly the best thing you can do; "Be on his side". 

An awful lot of the challenges that people face (including mine) come about because of other people's expectations, and this cuts across all forms of "difference" from the norm whether those differences are labelled or not. Everyone is an individual, and the best thing you can do as a parent is to encourage your children to be the best version of themselves that they can be, not to grow into a mould that you have prepared for them. Teach them to be kind to themself, to know when to ask for help and to know that's OK, to look after their physical and mental health, and to find their own version of happy. This is the same for any child.

I feel that my parents fell short in this respect; my mother particularly seemed more concerned about how my development reflected on her and how she measured up as a parent than on whether or not I was happy. Please don't fall into that trap.

And I'll echo some of Tinyexplorer's sentiment by saying that I am happy as I am and wouldn't want to be changed; I certainly don't want to be "cured" of being me - I would like a little more acceptance and understanding, but I can live without it.