Chapter 4 Results
4.3 Experiences Preceding, During & Following Diagnosis: Qualitative Findings
4.3.2 Diagnosis Experiences
Kirsten reported a lack of understanding of ASD‟s was demonstrated in people‟s inability to know how to react to these children.
“Some think that if they ignore her, she‟ll go away and the other thing when you say Autism, you assume they know what you‟re talking about and they‟re too embarrassed to say, „What‟s that‟.”
Julia felt that not only did a diagnosis help her to explain her son‟s behaviour, but it also helped her and her husband know what the best therapies were to put in place. Since they have done this, Patrick has shown great improvement.
“We were happy to know what we were dealing with, because when you‟re in the dark you don‟t know. And that‟s more scary, at least you can be proactive…”
“And then from that moment, we started putting in all the right, go to ABA therapy, and all that type of thing, so we started with all of that. And I think once he had the diagnosis it was just easier because when you went somewhere and he did something strange then you could say,
„Sorry, but you know my child has Autism‟.”
Sandra reinforced the importance of having a name for the behaviours and delays her son had displayed in the years before diagnosis, and how this had made coping easier for her.
“And a lot of people say but you don‟t need a name. But you do, as a parent you do need a name.
We were told a lot of times it‟s not necessary to have that name but it really, really is. It makes it a lot easier too, to explain to people, he has Autism.”
For Kirsten, diagnosis brought clarity and understanding.
“You‟re not floundering in the dark thinking, „What do I do, where do I go?‟ It‟s easier to be upfront with people and say, „This is what she is, she‟s Autistic‟.”
Before the diagnosis, Joanne did not know how to deal with the behaviour that her son was displaying. The lack of understanding of what she was dealing with and what he was experiencing was a difficult situation for her.
“And I mean that for me was probably one of the worst because I mean people look at your child, meanwhile he was actually just out of control, this was long before diagnosis and I didn‟t actually know how to deal with it so I just used to actually get him out of the shop. And it was terrible.
But at least we got a diagnosis…”
She felt that without a diagnosis, her son would have been placed in a home for mentally disabled individuals. She shared how as a result of a correct diagnosis, she and her husband had been able to provide the correct educational stimulation and environment for him, in order that he could progress to the level he is at presently.
“…without that I think he would have regressed and regressed and regressed…But at least we got a diagnosis…We didn‟t want to be hiding in the dark we wanted to know…”
Joanne felt extreme gratitude to the Educational Psychologist who eventually was able to give them a diagnosis, as it gave clarity and a sense of completion to all their unanswered questions.
Michelle was another mother who emphasized the importance of understanding that diagnosis brought.
“Everyone says to you „Oh, but he‟s somewhere on the spectrum‟, and you know you don‟t tell a parent „He‟s somewhere on the spectrum‟, it means sweet nothing. You need to have, well we
needed to have, some parents probably don‟t want to know, but we had to know what we were dealing with and it‟s made the world of difference.”
iii. Early intervention
Two of the participants in this research study, Julia and Sandra shared the importance of early intervention.
Julia emphasized this in the excerpt below:
“I think if we‟d had a diagnosis sooner, we would have put a facilitator in sooner, because the minute we found our facilitator…, it was like day and night, like a switch was switched on. He suddenly was coping at school, he suddenly was talking at school, he was doing the work at school, and I think you know two years ago we could have done that. His whole Pre School he hardly did anything, he just sat there and when the teacher could help him she did. I wish it had been sooner…I feel if we had a facilitator in place then, and everyone knew what they were dealing with we could have made his Preschool a bit happier for him and not such a terrible experience everyday of his life, just dreading being there, and all the rest of it.”
iv. Controversy of the MMR vaccine
One participant raised the issue of the much debated and controversial MMR vaccine. Julia believes that this may have been the trigger for her son‟s Autism. She reported that on his first birthday he still interacted with children at his party, had a large quantity of speech, and was able to tolerate loud noises. It was only after he had the MMR vaccine that regression began.
“He was fine on his first birthday. He had the MMR vaccine. I didn‟t know all the controversy, none of us did, the sister said this is the best thing you must have it done, so we had it done.
Cause he did have quite a lot of speech, and then it disappeared. I watched the video of his first birthday and he was very much involved. The nephews were there and he was jumping up and down and he was bashing away on this little bike he got and it was shrieking and squeaking. Now you go into a toyshop and he always asks, „Does this toy squeak?‟, then you mustn‟t squeak it. If he does it then its fine, but don‟t you suddenly squeak it.”