Dying to tell my story.

you are most most welcome - thank you for having a great conversation and sharing too.

You have a very positive outlook. And it's really wonderful to see. It's so easy to get caught up in the downward spiral of things. I know I have. But there's no sense in that. I do really like that strapline. Thank you again for sharing your positivity with all of us. 

You're most welcome - as with the prostate cancer I have (being a man gets in the way of being a man with prostate cancer) I'm making my quest by evolution rather than a revolution - "having real conversations for a change" is my strapline - no one can disagree with how you feel - they might not like it but I find finding out what my truth is is really powerful.

The funny thing is I'm working on a podcast about this called Dear Teacher. I'll be honest - when I removed my son from mainstream to homeschool him back in February, I was disheartened and a little resentful of the schooling system. I felt like my son had been done a great disservice by his teacher. However, we've both (my son and I) learnt so much since then and I really feel that so many of the obstacles we face are based on fear and ignorance. Now I find myself in a position of wanting to use that experience to help teachers. I know there are campaigns going on to address this issue but there's still so much red tape and like Dr Roth of the Open University says, there is still so much to be done. Thank you for your interaction. It means a lot. 

Hi and thank you for your wonderful reply.  Sometimes, just sometimes wouldn't it be great to have someone who is hearing you actually listen to you .  And you know when real listening happens cos you can see it in the other person's eyes: they are really listening. And then they respond accordingly (not react but respond) rather than unconsciously dismiss what you're trying to communicate by blanking out.  Sounds like your son has a great mom - well done.

Hello and thank you for sharing your experiences with us. My Dad had cancer and I was very grateful for the support and not only he, but we as a family received throughout his care. I was always surprised, much like yourself, how much rallying there is around a cancer diagnosis and in contrast, I felt so much abandonment in my son's diagnosis of autism. Well there you go, you have autism . . . have a nice life. I have been told by autistic people not to compare the two - one is a destructive disease and the other is a neuro condition. And I apologise for that. I just feel that if support was in place that more people would understand what it actually means to be autistic. I'm learning to celebrate my autistic child who is also high functioning. He also has PDA, echolalia and sensory overload. I was very proud that he went with me to the barbers and had his hair cut just this week. He was able to communicate with the barber that he didn't want the hairdryer or the clippers to be used. He's six. And so that was very encouraging. I realised I've rambled on a bit. 

Hi Tom - very many thanks for your understanding reply - conversations like this definitely help me put context around how I do me.  It also allows me to practice witnessing (without me going into overdrive) neurotypicals. 

I'd love people to have the same focus and understanding of my autistic world as they have with my cancer diagnosis. 

Again, many thanks - I'll keep folks updated.

best regards Martin

Hi there,

I'm really sorry to read of your re-diagnosis.  It's strange that you should post this as I work with someone who recovered from cancer a few years ago, only to be told recently that it has returned.  He, like you, is awaiting chemotherapy. 

Everyone at work knows I have Asperger's (I work for an autism charity, too), and there was initially a lot of interest in this from other staff.  It became clear, though - even with the information we had at work, and from things I've said - that it wasn't really sinking in with them, and no one really mentions it much.  I tend to get lumped in with everyone else - though I have been given some reasonable adjustments.  This other chap, though - with his recent news - has really become the focus of everyone's attention.  As you say - it's something that more people can readily relate to and identify with.

I'm glad that it brings you that 'connection' with people.  It's very sad, though, that it has to come about in such a way.  If anything, it demonstrates the struggles we will always have in getting across to others the ways in which we perceive and respond to the world.  Autism is something only a small minority of us are born with, and therefore something that only we can ever experience.  No one else can catch it, like a cold, or develop it, like a physical condition.  There are obvious cross-overs with people with mental health conditions, and maybe they can be more understanding and empathetic about what we go through.  But they still don't see the world through our eyes.

I wish you well with the commencement of your treatment.  Please keep us informed about how things go for you.

Best regards,

Tom