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High-Functioning Autism and Asperger’s Disorder: Utility and Meaning for Families

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Abstract

We used framework analysis to investigate the utility of pervasive developmental disorder diagnoses, interviewing young people (aged 9–16 years) with high-functioning autistic disorder (AD) and Asperger’s disorder (AsD), and their parents. Twenty two participants from ten families described both gains and costs resulting from diagnosis. Perceived advantages of AD and AsD diagnosis were increased understanding and practical support, and parental empowerment. Disadvantages included the effects of stigma and concerns about validity. Participants tended to consider AsD and AD as interchangeable terms. Findings suggest that the utility of AD and AsD depends upon both their validity and how these diagnoses are received in their cultural, economic and legislative context. Improvement of post-diagnostic services will improve the utility of AD and AsD.

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Notes

  1. In the UK a Statement of Special Educational Needs (‘a statement’) results from a detailed assessment of a child’s needs by the local education authority, and is associated with additional support and funding for a child. Diagnosis with a PDD generally increases a child’s chances of gaining a statement.

  2. In a UK school, a Special Educational Needs Coordinator (SENCO) is a specialist teacher responsible for promoting the interests of young people requiring additional support in education.

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Acknowledgments

We would like to thank the young people and parents who generously gave up their time to take part in this study. We also thank Josselyn Hellriegel, Rosie Kemp, Marianna Murin, David Skuse and Louise Slator for their help with recruitment.

Author information

Author notes

  1. Luisa Ruiz Calzada

    Present address: The Harkenwell Child and Adolescent Mental Health Service, Maldon, UK

Authors and Affiliations

  1. Research Department of Clinical, Educational and Health Psychology, University College London, Gower Street, London, WC1N 6BT, UK

    Luisa Ruiz Calzada, Nancy Pistrang & William P. L. Mandy

Authors
  1. Luisa Ruiz Calzada
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  2. Nancy Pistrang
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  3. William P. L. Mandy
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Corresponding author

Correspondence to William P. L. Mandy.

Appendix: Interview Schedules

Appendix: Interview Schedules

Interview Schedule for Young People

Meaning of Diagnosis

I’ve been talking with your parents and they’ve told me/I’ve read in your notes that you’ve been given a diagnosis of high-functioning autism (HFA)/Asperger’s disorder (AsD). Can you tell me a bit about that?

  • What does it mean to you?

  • What does it mean you can do/can’t do?

  • How would I know you had AsD/HFA?

Who told you about it?

  • Can you remember what they told you?

  • Did you get anything to read about it?

What’s different now to before you found out you have AsD/HFA?

  • Is anything better/worse?

Have your friends heard of it?

  • I’m just wondering how you would explain it to them.

Have you noticed any ways that you’re different to your friends or to people in your class who don’t have AsD/HFA?

Understanding of Similarities/Differences between AsD/HFA

So we’ve talked about HFA/AsD and you’ve told me how you heard about it and what it means to you. If it’s ok I’d now like to talk to you about something else. Have you heard of HFA/AsD (whichever label young person is not diagnosed with)?

(IF YOUNG PERSON ANSWERS NO GO STRAIGHT TO CLOSING QUESTION)

If yes:

(if HFA) What do you think it means to have AsD?

  • How might it make them different to you?

  • How might they be similar to you?

  • What about if they had high-functioning autism?

(if AsD) in what ways do you think AsD might make someone similar to you?

  • How might it make them different to you?

What do you think might be different about you if you had …instead of…?

  • What might be the same?

How would you feel if HFA and Asperger’s Disorder were given the same name?

  • Can you think of any advantages or disadvantages?

  • What would you want the name to be? Why?

Closing Question

Thanks ever so much for taking the time to talk to me, you’ve given me some really great ideas. I just have one last question for you. If you could say just one thing to someone who didn’t know anything about AsD/HFA, what would it be?

Interview Schedule for Parents

General Background

When did you first begin to suspect that (your child) was not developing as you might have expected?

  • Who first noticed?

  • What did they notice?

When did you first seek help regarding your concerns?

  • What did you do?

  • What happened?

  • How did you feel?

How long after you first sought help were you given the diagnosis?

How was the process of assessment and disclosure?

Was it the outcome you were expecting?

How did you feel when you were given a diagnosis of HFA/AsD for (your child)?

Meaning of Diagnosis

Where did you first find out about the concept of HFA/AsD?

  • To what extent has your understanding of HFA/AsD been influenced by your own experiences with (your child)?

  • How much has your understanding been influenced by external information?

What do you think it means to have HFA/AsD?

How much does (your child) fit into the information you have discovered regarding HFA/AsD?

In what ways do you think (your child) would be different if they did not have HFA/AsD?

What impact did the diagnosis have on you?

  • Did it change anything? For better? For worse?

  • Has it helped to have a name for your child’s difficulties? Why?

What impact did the diagnosis have on (your child)?

  • How did you explain it to them?

  • When did you first talk to them about it?

Have you heard of HFA?AsD (whichever their child is not diagnosed with)?

If yes:

What do you think HFA/AsD means?

How do you think HFA/AsD is different to …?

How would you feel if (your child) was diagnosed with … instead of …?

  • What might be different? What might be the same?

  • Would having a different label change anything?

How would you feel if HFA and AsD were combined into one category?

  • What might the advantages be? What might the disadvantages be?

What would you want the combined category to be called? Why?

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Ruiz Calzada, L., Pistrang, N. & Mandy, W.P.L. High-Functioning Autism and Asperger’s Disorder: Utility and Meaning for Families. J Autism Dev Disord 42, 230–243 (2012). https://doi.org/10.1007/s10803-011-1238-5

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