Understanding autism
Understanding autism

This free course is available to start right now. Review the full course description and key learning outcomes and create an account and enrol if you want a free statement of participation.

Free course

Understanding autism

3.3 Experiences of diagnosis: 1990s to now

Despite huge progress in diagnostic practices since the 1960s, parents’ reactions still vary widely, depending on what they were expecting, and also how the diagnoses were given. In these clips, note the efforts of all three parents to find positives in their child’s diagnosis.

Charlotte Moore had been relieved to have an explanation of why her son George, born in 1990, was still in nappies at age 4. Her second son, Sam, born in 1992, was also diagnosed with autism.

Download this video clip.Video player: aut_1_wk03_autism-puzzle_14_george.mp4
Skip transcript

Transcript

CHARLOTTE MOORE:
I wasn't that horrified by the diagnosis. And in fact, in some ways, quite relieved, because I was thinking, well, he's four and he's still in nappies, and is there something I've done wrong, and--
End transcript
Copy this transcript to the clipboard
Print this transcript
 
Interactive feature not available in single page view (see it in standard view).

Mark and his wife had imagined that Zack’s problem was primarily a failure to develop speech, and had to come to terms with the diagnosis of a lifelong developmental condition. Mark talks of profound shock, and emotions similar to bereavement and mourning. Yet he describes with warmth the realisation that Zack was just the same person as before the diagnosis, and of the progress they have both helped Zack to make.

Download this video clip.Video player: aut_1_wk03_mark.mp4
Skip transcript

Transcript

MARK LOVE:
My preconceptions of autism have changed a lot since diagnosis. Diagnosis itself was hell. I went into a room with my wife with a child who was showing no signs of speaking, or he was doing it very, very slowly.
I came out of that room 15 minutes later with an autistic child, essentially a completely different child. And there was that complete-- for the first few months-- feeling that oh my god, we've lost him. He's dead. You know, that child, that path, everything we've mapped out for him is gone. That is not going to happen.
Once you go over the initial shock, the initial mourning, you realise that actually he's still the same Zack that he was before that 15 minutes of very uncomfortable diagnosis. And we are extremely lucky in that our son has always been very jolly and very friendly, very emotional, very into hugs. And we've also found that contrary to the belief that they are shut down and they cannot develop, that we've managed to help him develop, that we've managed to make him make eye contact and enjoy making eye contact and also enjoy it and know that he's controlling our behaviour and our moods by giving us eye contact.
End transcript
Copy this transcript to the clipboard
Print this transcript
 
Interactive feature not available in single page view (see it in standard view).

Arabella was not comfortable with the way diagnosis of her daughter Iris Grace, born in 2009, was delivered. She stresses the need for parents to receive positive messages and a sense of empowerment.

Download this video clip.Video player: boc_aut_1_video_week3_3_arabella.mp4
Skip transcript

Transcript

ILONA:
So what was it like getting the formal diagnosis?
ARABELLA:
It was harder than I expected. I thought that it would give me the answers and I'd be relieved that they agreed with me, that they could see all these problems.
But it did feel like a harsh blow, the way that the news was delivered, the way that he sits you down and said that she was severely autistic and wrote this sort of-- like, on the piece of paper, drew a line and put severely autistic and Asperger's on either end and then put Iris down by severely autistic. And he said he said it twice to me as if I needed to know that, as if it really was right. Your child is severely autistic. Bam. That's that.
And I didn't realise at the time, but knowing that isn't helpful. I think that you should just think of it-- your child is on the spectrum. And they can move up and down that spectrum, all the way around it. It doesn't have to be you're there. Every day it can change. Every moment it can change.
So it's something that needs to be-- the news needs to be delivered carefully and in a positive way so that the parent feels-- they go away from that meeting and they feel empowered. They feel like it's not good news, it's not bad news, but this is their child.
And there are loads of possibilities and loads of wonderful things that can happen. But you've got to help them. You've got to help them get there.
End transcript
Copy this transcript to the clipboard
Print this transcript
 
Interactive feature not available in single page view (see it in standard view).
AUT_1

Take your learning further

Making the decision to study can be a big step, which is why you'll want a trusted University. The Open University has nearly 50 years’ experience delivering flexible learning and 170,000 students are studying with us right now. Take a look at all Open University courses.

If you are new to university level study, find out more about the types of qualifications we offer, including our entry level Access courses and Certificates.

Not ready for University study then browse over 900 free courses on OpenLearn and sign up to our newsletter to hear about new free courses as they are released.

Every year, thousands of students decide to study with The Open University. With over 120 qualifications, we’ve got the right course for you.

Request an Open University prospectus