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Experiences of gaining an ASD diagnosis (student research project)

(28 Posts)
MScSwanseaUni Wed 08-Jul-15 12:17:57

We are collecting data exploring parents experiences of gaining a diagnosis of Autistic Spectrum Disorder (ASD) for their child.

We are looking for parents (mother or father) who have a primary school aged child with an ASD diagnosis to complete a questionnaire exploring their experiences of gaining that diagnosis and any impact it has had on their lives.

Our aim is to understand experiences between so that useful additional support can be recommended where needed for those going through the process.

The data is being collected by Gaby Worgan, a student on the MSc Child Public Health at Swansea University, under the supervision of Dr Amy Brown. It has gained full ethical approval.

Full details of the questionnaire can be found via the link below. The questionnaire will take approximately 15 - 20 minutes to complete.

www.surveymonkey.com/r/ASDdiagnosis

MScSwanseaUni Mon 13-Jul-15 16:43:55

smile

ClassroomDynamic Mon 13-Jul-15 17:53:15

Hi, I don't fit your participation criteria but wanted to say Good Luck from a fellow masters researcher!
smile

MScSwanseaUni Tue 14-Jul-15 21:47:59

Thank you smile

MScSwanseaUni Wed 15-Jul-15 09:32:01

smile

Toffeelatteplease Wed 15-Jul-15 10:30:56

Completed

fitnessforlife Wed 15-Jul-15 10:33:06

"Gaining" the diagnosis? is that the new term for it now, like gaining an award? confused

Jacksterbear Wed 15-Jul-15 10:46:30

Done. Good luck. smile

MScSwanseaUni Wed 15-Jul-15 11:22:23

thank you smile

RosieCassMuggins Wed 15-Jul-15 11:25:58

Not relevant to your current study, but have you thought about research into adults getting an ASD diagnosis later in life? Do you know of anyone doing this? Can you offer any pointers/links?

MScSwanseaUni Wed 15-Jul-15 14:30:19

That's a really interesting idea Rosie. I don't know of anyone who is (my area is babies and children) but I will ask colleagues who might know

RosieCassMuggins Wed 15-Jul-15 18:55:50

There's plenty of evidence, on MN and elsewhere, that increasingly adults are seeking diagnosis. The NHS is pretty hopeless, however, and discourages adults from taking investigation any further - which is deeply unhelpful.

Academics could really help with this. Autism doesn't end in childhood, and many, many adults did not get diagnosed in childhood but are aware of their autism now - in some cases this awareness begins when their own child is diagnosed.

MScSwanseaUni Wed 15-Jul-15 19:45:15

I'm thinking this could make a very worthwhile project smile

RosieCassMuggins Wed 15-Jul-15 19:50:04

If there were greater awareness of autism in adults, it would encourage schools and others to diagnose during childhood. Clearly one hell of a lot of children are missed or deliberately not flagged up as possibly autistic. IMO there is a massively casual attitude towards diagnosis, as it if really didn't matter. Adults with autism can attest to the fact that it really does matter, a great deal.

SewingAndCakes Wed 15-Jul-15 20:12:08

I've completed the survey and wanted to add that it's only since learning about ASD for ds1, that I've come to realise I may have it too. It explains a lot of my behaviours/thoughts when I was a child.

MisForMumNotMaid Wed 15-Jul-15 20:25:37

I've filled it in.

One point to mention is that I consider myself a carer not a SAHP or not working. It wasn't an option on the list.

I also agree with others, i test as Autistic on all the online tests and i can relate to lots of things my DS does and remember those experiences as a child.

Ataraxy Wed 15-Jul-15 21:12:23

Done. Oh something my supportive contact at CAMHS told me... he said that I was fortunate that my son had been accepted for testing as he had four other children whom he felt also had ASD but had been rejected due to lack of resources. So the parents of these other four children had been told that their children either did not have ASD or had "autistic traits" only at best simply because there was not the time/people available to look into their case.

Best of luck with the Masters. I had my graduation this week, well worth all those late nights! grin

MScSwanseaUni Wed 15-Jul-15 21:15:41

Thank you all very much smile

MisForMumNotMaid - a very, very good point thank you

MScSwanseaUni Wed 15-Jul-15 21:16:17

Ataraxy - thank you. And also a very good point. Ill suggest Gaby does a PhD on this ;)

MScSwanseaUni Fri 17-Jul-15 10:34:49

smile

MScSwanseaUni Sun 19-Jul-15 15:45:46

smile

KarlosKKrinkelbeim Sun 19-Jul-15 16:12:02

done. I've been very rude about GPs I'm afraid. But in this context, they deserve it. I haven't met one yet who knew their arse from a hole in the ground when it comes to ASD. HVs better, but too cowardly to tell parents things really aren't right.

MistyValleyHigh Sun 19-Jul-15 16:21:58

With ref to what Ataraxy said, from reading the SN boards here and from my own experience, it's actually very hard to get an ASD diagnosis for your child unless it's very obvious 'classic' ASD (and probably sometimes even then).

I have been fobbed off by school for years despite CAMHS clinical psychologist recommending referral - unfortunately school need to agree and provide evidence, otherwise it doesn't happen. And waiting lists are very long even if you can get referred, two years in our area.

Twirlypoos Sun 19-Jul-15 16:32:12

Done smile

MScSwanseaUni Sun 19-Jul-15 17:31:48

Thank you all

Honest answers are what we want Karlos!

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