Parents of children on the Autism Spectrum

What is life like if your child or children are on the autism spectrum?

How will they develop? Will they become independent? Have a relationship? Lead happy, fulfilling lives. What effect does it have on other family members? These are all questions the parents ask themselves when their children are diagnosed with autism or Asperger's Syndrome.

This website offers some answers to these questions by presenting the experiences of 44 parents of people aged between 3 and 57 who have been diagnosed with autism.

Most of the interviews have been filmed so you can watch, listen or read their stories. Parents talk about how they began to suspect there was something different about their child development, and how they went about getting a diagnosis, which for some parents took many years. They discuss their children's education and their experiences with health professionals.

Perhaps most importantly, they talk about their everyday lives. The highs and lows of the lives of their children. Their accounts are open, honest and often humorous. The interviews provide real insights into the characters and personalities of the children, their likes and dislikes, and relationships with siblings and other family members.

Tony and Alison

So, what did you think when you were in the room with her?

Tony: She just confirmed what I knew, I think. I knew anyway. I had known for years before…

Alison: He is not as emotional as I am.

Tony: No, I had known, I just you know blimey you know the kid’s autistic.

Alison: In a way …

Tony: Get on with your life you know. Just help him.

Alison: It was nice to get a diagnosis so we could finally say, thank God for that. We know he has got this.

Bobbi

To get the diagnosis for that one day with all the doctors there, it was like ping, ping, ping, like light bulb moments going off all over the place and it was a real relief to be honest with you, it really was, because for me as a mum it made me feel like I did understand my son.

Kirsten

Since he was born, he got up at 4 o’clock in the morning. Occasionally he will lie in to the back of five, but 4 o’clock has been his time for waking up.

Carolann

But I have seen the horrible rocky road she has had to travel and I think any parent would feel that about their child, who they know has been so hurt and you love them so dearly. I think she is smashing.

How would you describe, Connor to somebody you haven't met? 

Well, before. Before the last few months. Very funny. Very, very, I would have said before really nice manner that he's used to, because I used to hang out with him quite a bit because he, like, on his birthdays, he'd always.

He'd always, like, want to go on his birthday celebration, but with just me. And then we had this joke about just you and me, mum. And on those days, it was quite funny because he didn't want to talk to me or anything. He just basically didn't want anyone to go and knew he couldn't go on his own, I think. But he was quite good. Company is quite something, quite comfortable about hanging out with him. I find.

He is. He's, he's just a nice guy. You know, if you asked him to lend you anything, he'd lend it. He's got he's, he would only ever open one present at Christmas. He would want one thing, that's all he'd want. So you'd end up with all these presents that you would know and that would drive the other kids mad. But he actually got what he wanted, and that was what he wanted.

And I think quite a lot of what he does or what he used to do with would really show up how odd our lives were in a way that I used to find quite amusing.

There's a lot of what we do in everyday life, like sort of saying, how are you? We say, fine, and a lot of this stuff's totally sort of throwaway because we never say how we really are. And he doesn't do any of that. And so you cut away all that, sort of all those layers that we all do that all the time in a way that you sort of like, oh, I didn't realise that's what I was doing, you know, till you showed me because you refuse to engage with it.

He likes he loves transport. He likes watching YouTube movies about transport. He loves watching DVDs. He will often like drawing, does amazing drawings. He does the same drawing on each page. We give him a notebook. Whatever it is he's drawing at that time, whether it's a prison or a person or whoever. And he would do very distinctive drawings, and he'll fill every single page of a notebook with a drawing that's identical. It's really weird. So he likes doing that.

He likes going out for meals. Loves swimming. He's like a duck. He's, absolutely loves swimming. And he likes laughing. He he very much. You can really make him laugh a lot. So. Yeah, he's cool.

And then what other positive things about having an autistic child?

Oh, lots. Really lots of positive things. I think my experience, it's opened my eyes to things in a way that when I think back to those early days when I knew nothing about disability, I'd cringe now. I absolutely embrace and love difference. I absolutely love, you know, I have so much admiration and respect for people who are different and what they do and and all the rest of it.

I think it's helped me in my career enormously. It's really give me a focus of research that I've found fascinating, and I love interacting with other academics in the same area. I love the whole, disability studies and all that. So I love the overlap team work and home life. I think that's great. This whole interest in disability, what else?

It's made me a better person. I think it's made me appreciate different things in a way that I wouldn't have done before. It's made life interesting. It's made life very colorful. It's even writing the blog. I love writing the blog. That's been fun, which I wouldn't have probably written about before.

So yeah, there's all sorts of really positive things. And he's great. So.