Understanding autism
Understanding autism

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Understanding autism

3.5 After diagnosis

Diagnosis is merely the beginning of a long journey. For parents, it can mean struggling to access appropriate education (both pre-school and school) and worthwhile interventions. You will read more about these in later weeks. Families are usually keen to know the prognosis, that is, the likely outcome in the longer term. This however is very difficult to predict. Some individuals may need a high level of care and support all their lives, some may need a moderate amount of help with daily living skills and may be able to work part-time, whereas others are able to live independently, hold down a full-time job and get married.

Activity 5 The benefits and drawbacks of diagnosis

Allow about 15 minutes

You have seen that coming to terms with diagnosis is a challenge for any family. Some parents who are aware their child has difficulties may even avoid formal diagnosis, fearing that the ‘autism’ label will be detrimental.

Reflecting on what you have read and the video clips you have viewed, note three positive consequences of diagnosis and one potentially negative consequence.

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Answer

Positives

Diagnosis:

  • helps parents to understand behavioural differences that have concerned them
  • explains why a person is very good at some things and struggles with others
  • may help other people to accept why a child or adult behaves unusually
  • may, particularly for a child, enable access to services and interventions, as well as appropriate support at school and/or social care services
  • may, particularly for an adult, provide self-understanding, enabling the person to accept ‘who they are’.

Negatives

Diagnosis may:

  • be hard for some family members to accept, leading to rifts
  • serve as a stigmatising label
  • cause uncomfortable emotions such as guilt.

Now watch this clip in which Arabella concludes in favour of diagnosis, despite the ups and downs:

Download this video clip.Video player: boc_aut_1_video_week3_arabella_additional.mp4
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Transcript

ILONA:
On balance, do you think it was helpful having a formal diagnosis?
ARABELLA:
I think it was very helpful. I think after the initial sort of period of-- you take some time to sort of get your thoughts together and get your mind in gear of how you're going to turn what seems like a depressing diagnosis to the positive.
But once you've got there, it's incredibly-- it's so clear in your mind. There aren't any questions anymore. It's not like you have to worry about, is my child autistic? Isn't she?
All of the peer pressures from family saying that they think she's, she's just a slow developer, or she'll get there in the end, you can say to them, no, this is the case. This is what we're dealing with. Now we have to work together to help them. So yeah. I think it is positive.
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