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Process of getting a diagnosis for ASD

9 replies

Buscake · 13/08/2014 15:28

Hello everyone, I've googled this aplenty and am coming up with lots of differing processes and pathways to getting a child diagnosed with an ASD. My 3.5yr old daughter was referred to a SENCO for biting another child, she was then referred to speech and language therapy, as the SENCO was concerned she had comprehension issues. The s&l therapist said there were no speech and language or comprehension issues, but she picked up on some social interaction issues and delays. She thinks my girl has an ASD that does not affect her ability to learn, but that does or will affect the development of her social skills.

I was quite defensive on hearing this and attributed these characteristics to her personality, but the more I think about it the more it makes sense. I'm finding it all quite hard to come to terms with, more so perhaps because she has yet to receive an official diagnosis. She has been referred to a paediatrician for an assessment, but I have no indication of how long the wait may be. My husband is a clinical psychologist so you'd think we would have more of an idea, but he works with adults and isn't particularly uptodate with camhs-particularly as he trained in a different trust to the one he now works in.

So I was wondering if anyone could give me any idea of what comes next? Will the wait for the paediatrician be 6 months+? Will s/he then refer onto a psychologist or psychiatrist? Or can s/he make the diagnosis? What sort of support will she receive in light of this? My mind is going a mile a minute and I can't seem to get any concrete information out of the internet, despite the vast amount of information out there. I know it may depend on the area you are in, severity of symptoms etc. just wish it was laid out nice and simply so I could worry a little bit less! Many thanks if you read this far :)

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PolterGoose · 13/08/2014 15:54

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Thankgoodnessforcheerios · 13/08/2014 15:58

Hi Buscake,

We waited 2 months for an appointment with a Consultant in Paediatric Neuro disability. That was the middle of March and we are still waiting for a Multi disciplinary Assessment for a diagnosis. And we have been 'fast tracked'.
I was informed that it can be up to a year wait for a diagnosis and if you are fast tracked this can take about 2 months off your wait.

It seems to me that all professionals involved have to come together to make a diagnosis and one person can't diagnosis on their own. ( This is in my area with the NHS). I think others on here have paid privately for a diagnosis so it is possible.

Once we saw the Paed we were then referred for other services such as S & L and Occupational Therapy. We were also offered genetics testing.

Good luck and I hope you don't have too long a wait .

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Buscake · 13/08/2014 18:43

Thank you both for your replies. As I suspected, a relatively long wait ahead and various assessments from different sectors. What does the genetic testing involve looking at?

I'm feeling pretty lost right now. I really hadn't expected this outcome from her s&l assessment, I genuinely didn't see a problem. Now that I've read it in black and white I have noticed more and more possible traits that would back it up. I know she is still the same little girl as a week ago, but I suddenly feel like I can't cope. She has struggled since preschool broke up for the summer holidays, and is having at least two really unbearable tantrums a day. I used to see them as something she would grow out of, now I just feel like we will always struggle with her behaviour.

Our friends and family are not really helping, all just dismissing it and saying of course she doesn't have an ASD. But as I said, her father is a clin psych and he and I both now think this is a very likely diagnosis, now that our eyes have been opened to it. Just need to come to terms with it I guess, and try to work out some strategies that will help her. At least now we can approach her behaviour from a new angle.

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PolterGoose · 13/08/2014 19:48

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jumboartbox · 13/08/2014 23:13

Hello
You remind me of me a couple of years ago as my DS was your DD's age
Especially with the tantrums ! Things have improved with age.
It takes a while for diagnosis to happen but the main thing is t

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jumboartbox · 13/08/2014 23:18

Oops sorry pressed wrong button!
Genetic testing for us was just a blood test then a chat with a genetics doctor
We had that reaction from friends and family too. It wasn't exactly very helpful!

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2boysnamedR · 14/08/2014 05:59

She's still the same girl as she always was regardless of any diagnosis. Diagnosis will just change the way you help her with certain things - it doesn't change her at all.

It's very very hard being where you are but if you do get a diagnosis things can only get better from there. It takes time but after not seeing some of my sons quirks I can now understand him better.

Genetics is a blood test but ask lots of questions before you have it. I found out a few months back my husband has passed a duplication onto our kids. I feel like it's left me with only half answers as I can't get anyone to agree to test siblings which makes me wish I had never known

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Buscake · 14/08/2014 15:03

I really appreciate all your replies. I have a whole huge list of strategies from the s&l therapist to try, will start those at the start of the new week. I got a call and her paediatric appointment is in 2 months time, so not as bad as I had thought. Will take it from there and see what happens.

We have all had genetic testing for cystic fibrosis in the past (husband is a carrier) so I know what it entails, I just wondered what genetic markers/mutations they look for, but I guess I can ask further questions like that if it comes to pass.

Had a long talk with MIL last night explaining what was happening and just had her constantly saying 'I disagree' and 'well xxx who has aspergers didn't need any extra help or care etc etc' she doesn't seem to understand at all. We don't want reassurance, we want acceptance!

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jumboartbox · 14/08/2014 20:43

Went to an earlybirds type course where they explained the weird reaction of family
Every one is going through the process of denial, depression, anger, bargaining, acceptance at different stages, different rates etc
So everyone ends up on a different page
Just when you need support

It's easier for families to be in denial as they are further from it and don't have to live as closely to consequences of inaction
Also families don't like to see us hurting so like to minimise the pain

Not that any of the above is a helpful way to react !!

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