And thinking back to the time that Lydia was diagnosed because she was the first one who had her diagnosis. Did you know much about autism at that time?

No, nothing. No I don’t think I I suppose I’d heard of it I don’t know.

So how did you go about finding out about it?

Really I’d got it second hand from my daughter largely, although, though she did put books in my direction and I did read. I have read some of the books. But it was partly working with the supervisors and people on the ABA programme that taught you a lot. It taught me a lot as a teacher actually. Because what I feel about the ABA philosophy is that it is good parenting and good teaching writ large because it’s completely consistent. You’ve got to be absolutely totally, minutely consistent. And that’s good when you’re dealing with any child really.

I have a colleague through my work at the church whos been a teacher. She’s a head teacher of a small school. And I talked to her a lot about it. And she explained different types of you know, the different parts of the spectrum of autism, and I talked to her a lot and she was, she was very helpful and various other people who, there’s somebody else I realised at church her nephew was effected, and talked about his experiences. And I just pick up whatever I could. I watched television programmes, listened to things on the radio. Read books, and you know, once you start talking about it, people start exchanging information and giving you books and [um] I’ve read several books on it now. Mainly the one I mentioned earlier, The Dog in the Night time’ or whatever it is called. And there’s another book somebody gave me, that actually her, somebody distant in her family had written about the experience of having two boys with autism. And they’re, they’re quite big now. I think they’re grown up now. And it was quite a harrowing book actually and then watching different things. There was a film, a documentary, not a documentary, a sort of drama about a boy who had a dog, and I can’t remember what it was called now, it’s quite a famous one I think.

Bryan’ Hm. I think actually, for me, anyway, and other people have a different view, but for me what I would have liked to have had is the sort of experience that you’re gathering now from other people who have been there and done that could, if you like, reassure me that my world hadn’t actually fallen completely apart and that there were compensations and good parts and as well as the disappointments that undoubtedly come. So I would have very much very much valued sharing the experiences of people who had gone here before. And I think I would have preferred that to textbooks on the subject, which tend by and large to be written from the point of view the specialis.

Moira’ You can always get the factual, textbook information. But how, as you said, how to cope and live with it, with the shock of it. When, I think, this is, it’s the shock of diagnosis isn’t it, and facing, not knowing what you’re facing and people who have been there and done that can probably help more than a fact, a list of facts in a paper or a book.

And I have to say that I find the books that have been really helpful are the ones that have been written by those high functioning autistic people themselves and Aspergic people, or people whove in their families have done the research, because they saw in their own children that they needed to look at a medical form and not a psychological form, because they know that this is, particularly the study, I’ve forgotten the gentleman’s name, but a doctor who did pioneering work, because he had two twins, one of whom was autistic and one who wasn’t. And they’d been raised exactly the same way, so he knew it just couldn’t be the environment of the family or psychology alone, it had to be something more, and went onto a medical diagnosis, and medical research. That’s very helpful isn’t it?

You know, and so when Temple Grandin’s books came out and when she was interviewed on television and she could explain as an adult what her world had been like as a child, and all the things that she found difficult. You know, I was thinking when she was talking about… She talks about how as a child she would runs and endlessly through her fingers and be completely absorbed in her own world and needing that tactile thing and it kept her safe and contained and it was something that she just had sensory pleasure from which she didn’t get from some other hugging or kissing or other things, and it was something she liked. And when she talked about it, I suddenly sort of remembered my little grandson just constantly running his hand across the textured surfaces and it’s something he needed to do and he really need to do it. It was, you know, from a really early age or being disturbed by even minutiae on the plain floor surface and picking up those things. So when she, when she was talking about how she looked at the cattle on her uncle’s ranch and saw the patterns that they saw were different and what had spooked them, that leaves were there. I sort of thought, Yay! I can understand tha. This woman from her own experience has been able to open a window into my grandson’s world and I have found those the most useful books and some of the other things that have been done from clinical studies, I’ve not wanted, you knowI probably will get round to doing it one day because I like intellectual understanding but I have chosen carefully what I’ve read and at times, especially in the early days when I was coping with the emotion sometimes I thought, I can’t deal with that, it’s enough to deal with what I’m dealing.

The government produces, in association with people, an important little booklet that is available about information for parents, but there isn’t a similar book for grandparents. The National Autistic Helpline is always there for anybody, any family member who needs to get more information or support and they actually have got a brilliant website for grandparents which is easily accessible and goes through some of the things that grandparents will face about understanding autism or offering support to your family, offering support to the siblings, it’s all in there. But it isn’t in a booklet form. it’s only on the internet at the moment. Or it was last time I approached them, and it would be brilliant if that was actually funded and put out there as a booklet because not all grandparents, particularly people of older generation than me, because grandparents come at all ages. Some of you can start be a grandparent at 80 and older. it’s really useful to have something in your hand to keep as well. it’s fine to read something on the internet, but to have it in your hand to keep is really useful. And it’s very practical and it’s very easily accessible in its content. So it would be great to see that wherever there’s a clinic or a diagnostic area of, of a hospital or speech and language therapy, these kind of easily accessible information is there. And I think that it’s after diagnosis as much as before that parents need support because they enter into a whole new world of parenting.