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Help please!

Ashhhh2403

Hello all, 

We are two third year undergraduate BSc psychology students at Swansea University. We are currently collecting data for our joint final year project, which we have chosen to focus around the parents experience of the diagnosis of ASD. The survey responses are kept completely anonymous has gained ethical approval from the ethics committee at Swansea University.

We are looking for parents with at least one child on the ASD spectrum to fill out a simple online questionnaire on their own reactions to, and experiences of, their childs diagnosis.

The aim of the research is to gain insight into the parent's reactions to diagnosis, highlighting problem areas and hopes to improve the future diagnostic process.

This project is a huge part of our overall grades, so we hope to create a brilliant piece of research which will in turn improve the parental experience of the diagnostic process!

Here is the link to the survey: [linked removed by moderator]

Many thanks for your help, it is hugely appreciated Smile 

Ashleigh & Zoe

Parents

  • I think until the culture of professionals not listening to parents changes no amount of research will change assessment and diagnosis.  Parents are treated like second class citizens, without intelligence, without rights and who could not possibly give an accurate portrayal of their child's traits and difficulties.  The Government says that parents are experts in their own children, but clinicians with God complexes do not seem to agree, children fail to get diagnosed because of supposedly experienced and qualified clinicians (who just took a brief training in how to administer the ADOS but have no knowledge of autism and day-to-day life for someone on the spectrum) rely on results of clinical tools and treat it like a tick-box exercise.  "Computer says no" doesn't work with human beings.  The ADOS is only 77% reliable (I can provide research evidence on request) in high-functioning individuals, yet still it is hailed by many CAMHS as the holy grail of diagnostic tools.  Diagnostic tools are also optional, and are no substitute for clinicians understanding the fact that autism is a spectrum, female presentation can differ and many children do not present their typical self in a clinical environment, as well as listening to parents.

    Change the culture within the NHS before trying to change the pathway to diagnosis.

    My local CAMHS believes that (and I have this in LA documentation) that parents try to get children diagnosed to get benefits (such as DLA) and I sat next to a CAFCASS professional at a safeguarding workshop who told me the same and also seemed to think that MSBP/FII is commonplace.  These idiots need educating.

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  • I think until the culture of professionals not listening to parents changes no amount of research will change assessment and diagnosis.  Parents are treated like second class citizens, without intelligence, without rights and who could not possibly give an accurate portrayal of their child's traits and difficulties.  The Government says that parents are experts in their own children, but clinicians with God complexes do not seem to agree, children fail to get diagnosed because of supposedly experienced and qualified clinicians (who just took a brief training in how to administer the ADOS but have no knowledge of autism and day-to-day life for someone on the spectrum) rely on results of clinical tools and treat it like a tick-box exercise.  "Computer says no" doesn't work with human beings.  The ADOS is only 77% reliable (I can provide research evidence on request) in high-functioning individuals, yet still it is hailed by many CAMHS as the holy grail of diagnostic tools.  Diagnostic tools are also optional, and are no substitute for clinicians understanding the fact that autism is a spectrum, female presentation can differ and many children do not present their typical self in a clinical environment, as well as listening to parents.

    Change the culture within the NHS before trying to change the pathway to diagnosis.

    My local CAMHS believes that (and I have this in LA documentation) that parents try to get children diagnosed to get benefits (such as DLA) and I sat next to a CAFCASS professional at a safeguarding workshop who told me the same and also seemed to think that MSBP/FII is commonplace.  These idiots need educating.

Children
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