Table 9.2Examples of support provided during the diagnostic process

ExamplesStudy qualitySupporting quotes from parents
Number of studiesStudy designLimitationsInconsistencyIndirectnessQuality
Good support
Involving the school in child’s assessment 2261Uncon obsNot usedNot usedNot usedVery low‘It is a whole attitude shift and once you make that, things fall into place. I think that’s what [VT-] RAP does. It pushes that button that gives people an attitude shift, I know it did for the school team….it made us feel like somebody was coming to our rescue. We dialled 911’
Involving family in child’s assessment 2261Uncon obsNot usedNot usedNot usedVery low‘We really felt like we were a part of the team, and somebody was listening to or questions. And while we always knew that a lot of the questions may not have answers, we felt that while there weren’t answers there were a lot of people out there who could give us ideas.’
Making individual team members to become more engaged in supporting children 2261Uncon obsNot usedNot usedNot usedVery low“It was wonderful having the SLP join the consulting team. She is learning, too. She goes right for it. She’s a practical minded person and I value her opinion. She finds out if she doesn’t know something, and there is good follow-through. Her involvement really benefited us’
Facilitating a shift in the family’s attitudes and behaviours 2261Uncon obsNot usedNot usedNot usedVery low‘[VT-RAP] was a complete asset to our son’s future. It helped us look at him in terms of how the learns and doesn’t learn. We [now] accommodate him instead of him accommodating us.’
Support from school 1351Uncon obsNot usedNot usedNot usedVery low‘And since she’s been at the school, they’ve [teachers] been very helpful, they’ve taught me a lot about the autism
Providing opportunities for families to contact each other 1351Uncon obsNot usedNot usedNot usedVery low‘I feel quite lucky, because I did have that group for parents of newly diagnosed children’
Poor support
Not providing any support 1351Uncon obsNot usedNot usedNot usedVery low‘It’s that bad, it’s that isolating, and I feel that shoved out of society’
Lack of immediate help and support in times of crisis 1351Uncon obsNot usedNot usedNot usedVery low‘It’s still slightly bizarre or surreal in my own mind, because I rang this number, which I thought would be answered immediately, and I was told that I was in a queuing system, could I be patient and wait, while this adolescent was waving a knife in front of me’
Professionals not always easily contactable1351Uncon obsNot usedNot usedNot usedVery low‘They need to be more available.’
Little continuity or communication between the various services and authorities involved1351Uncon obsNot usedNot usedNot usedVery low‘I find it very frustrating how social services, health and education…all work very much independently of one another’
Offering support immediately after communicating the diagnosis1331Uncon obsNot usedNot usedNot usedVery low‘More time and information should be given to parents at diagnosis. I was informed of the diagnosis and told I would be seen by the family services worker in a month. That was it. Not explanation. No hope. It was obvious that they knew what diagnosis they were likely to make prior to the play session but I had no prior warning. No one had the decency to tell me what might be wrong. At that point I needed to believe there was a future and I was appalled at the way I was treated. I should have had counselling there and then and lots of information given to me.’
Parents’ expectations – what kind of support should be provided
Offer more guidance to help prepare for the future1361Uncon obsNot usedNot usedNot usedVery lowThe study authors reported participants views in summary only, without supporting quotes
More practical support (e.g. review more frequently, offer intensive one-to-one sessions1361Uncon obsNot usedNot usedNot usedVery lowThe study authors reported participants views in summary only, without supporting quotes
Offer more support, regardless of level of disability1361Uncon obsNot usedNot usedNot usedVery lowThe study authors reported participants views in summary only, without supporting quotes
Co-ordinate information better (e.g. share feedback from clinic)1361Uncon obsNot usedNot usedNot usedVery lowThe study authors reported participants views in summary only, without supporting quotes
Providing parents with support on demand1351Uncon obsNot usedNot usedNot usedVery low“It should be there all the time, whether you need it or not, before you get to that stage [breaking point]’
Establishing a more coherent service, involving health, education and social services1351Uncon obsNot usedNot usedNot usedVery low‘Tri-agency alliances are a must’
Appointing someone as a ‘key worker’1351Uncon obsNot usedNot usedNot usedVery low‘Someone who is able to communicate between the agencies’
Providing parents with respite care1351Uncon obsNot usedNot usedNot usedVery low‘People who would befriend him…like a buddy system, where people would befriend and actually just sort of spend time…and actually take him outside the family environment…It alleviates some of the burden from me and my wife, and particularly my other children.’

Uncon obs: Uncontrolled observational (see Methods, Section 2.6.2 for detail)

From: 9, Information and support

Cover of Autism
Autism: Recognition, Referral and Diagnosis of Children and Young People on the Autism Spectrum.
NICE Clinical Guidelines, No. 128.
National Collaborating Centre for Women’s and Children’s Health (UK).
London: RCOG Press; 2011 Sep.
Copyright © 2011, National Collaborating Centre for Women’s and Children’s Health.

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