From that perspective from health professionals I think… just as an instance, my grandson put, he’d got the bath sponge in the bath and he’d pulled a little piece off and put it up his nose, and this caused a problem and we had to take him to A & E. And it was just horrendous the performance we had with the doctor that was on duty in A & E because, What is this autism He was a foreign gentleman. What is this autism? I don’t understand? And you just wring your hands, you know, just feel so frustrated because, so there’s not the understanding. I don’t think there’s enough knowledge among health professionals. I mean if it’s their field like the paediatrician, the consultant paediatrician that diagnosed them, yes.

But my grandson had a fall recently, and broke his leg, through an accident at one of the play centres in our local town. And… my daughter took him to, no my son-in-law took him, because my daughter had a yoga class, and my son-in-law took him to A & E because it was too late for her to cancel this, the class that she was running. And they immediately alerted Social Services, because they said it didn’t look like a regular accident, and my son-in-law couldn’t explain the situation enough.

So that was a bad situation to be in, because, but my son-in-law did say that we could, he could produce an accident report from this place where the accident had happened, and because he had a fracture and had to have a pot from thigh to toes… it was sort of distressing for [grandson’s name], but it was distressing for my son-in-law as well. Because as he said, he said before he left, before my son-in-law left with my grandson that he would have to inform Social Services, and they would be investigating and he was just [small laugh] you know, well if you have to do that, you have to do that, he said to the guy. But he said, You know, I can assure you that it was an accident You know, he said. Well this is normal procedure, we have to do this, so..

And would you have a message to health professionals. I know you didn’t have a good experience?

Yes, if you don’t like parents and children you shouldn’t be in the job. That would be number one.

Yes.

Two is a bit of empathy about when you’re going to give, give people terrible news about their children, life limitI mean either because they’ve life limiting diseases like cancer, or life, in a way life limiting conditions, like autism. They should be as a bare minimum a counselling support sitting there waiting to pick them up on the way out with tea. They might not want it, they might not want it then. But then that person should have the, maybe not, you can’t offer 24 hours, 24/7 it’s not the Samaritans, but you know, a reasonable amount of time, Monday to Friday where that person would be available.

When the parents have assimilated, began to assimilate the news they could pick up the phone and say, We’re in a terrible mess. Can we just come in and talk to you Or the person would go to their home. I mean just, it’s something has to happen. You can’t do that to people. You can’t give them that news about their children. And not, and then not care for them pastorally. it’s most extraordinary encounters. I can’t imagine anything done much worse really. Except giving somebody the news that they’ve got cancer, and then just walking out the room, which is pretty much, almost what they did.

And also just the negative, just the negative string of stuff they said, Oh well he can’t do this, and he can’t do that, and he can’t do the other thing Nobody said a single nice thing about him. If any of them had prefaced the, their story about how they’d found him with, you know, and used his name, He’s a dear little boy, and we noticed that he could do these things. In the normal range of ability we’d expect him to be able to do those things, and it was sad that we didn’t see those things…

Well if you’re listening to this and you’ve just discovered your grandchild is diagnosed and they’re still quite little, they are only may be two or three, now I’d want to say that there is a light at the, at the end of the tunnel. it’s a different kind of light from the one you might have been expecting. So it’s not that you’re suddenly going to come out and everything in the garden’s going to be great, because it isn’t. And I’d be a liar to say that that was true, but it is a bit more like somebody once said, You thought you were going on holiday to Holland and actually find yourself in Spain. Or maybe you thought you were going to Spain and you’re actually ending up in Iceland. But you end up, you’re ending up in a, you’re on a journey to a different place. You don’t actually probably even know where the destination is. You thought you were on one kind of journey with a grandchild and it’s now not going to be quite like your fantasy, but it isn’t going to be all bad. There will be loads of laughs along the way. It will be sometimes a bumpy ride, but you start to celebrate the small things.

So whereas your neurotypical grandchildren might learn to play the piano or go and play in a football team and all that’s marvellous and they learn the nine times table and you’re over the moon. Your child, grandchild might learn to eat with a teaspoon but you’ll get as a big a kick out of that as you will out of your other grandchild going to join the football team. And so you learn to celebrate the tiny achievements and they are glorious. And we have had great fun in, when we hit those little milestones. We say, Yessss

And what would you tell other grandparents that it was like to have a grandchild that’s got autism?

In some ways, it is this extra dimension of, of life, it’s a different outlook and to try and look at that in a very positive way, to you know, there are difficulties and sometimes you’ve just got to stand back and let the difficulties happen and sometimes you feel you want to cure everything to make everything right, and of course that can’t be done, and to sometimes stand back and let things, let things go. And let them, you know, find their own way of doing things. And to respect him for his way of, you know, his different outlooks. Not to say to him, Well you mustn’t do that. That’s not the way behave And say, Well you know, that’s the way you do it. This is not the way other people do it And you know, to respect him for his difference.

Not really. Just… as a grandparent, my grandson, it was our first grandchild, so I was asked by my daughter and sonwell my son-in-law first and then my daughter, if I’d like to be present at the birth which I was, and that was such an experience. And then you watch this little baby develop, and then this autism kicks in and it was just devastating really, but to any grandparent out there, just don’t let it hold you back, you know, just don’t be negative, you know, just be positive all along the line, and don’t think about, I mean you have to think about the future and what will happen, but that’s really down to us.

But as grandparents just give your children the support and give your grandchildren all the love and support you can, and just be positive and get whatever help is out there. And talk to as many people. I’ve just found myself waffling on for hours to people. I met a young man on the station today while I was waiting for you to arrive, and he worked as a, he works in health care with elderly people at a care home, and, and we sort of got talking about this subject. So as grandparents if you feel you want to be involved and just get involved, and just don’t see the black side of it, the negative side, just accept the children for what they are, and just love them and give them care and attention, and give the attention all the help and support they need as well.