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Waiting for ASD diagnosis but already sceptical of the outcome...

NAS81879

We've had problems with our 12 year old daughter for years and finally got a private assessment (awaiting diagnosis next week) after GP referral. Strong indications from psychiatrist suggest she's borderline case, so we're suspect she won't receive ASD diagnosis.

Our struggle is not that she doesn't receive a diagnosis for ASD but that we're then back to square one trying to find out what the problem is - it could be extreme anxiet. Obviously, we've not received the outcome yet so I'm jumping the gun slightly but also I'm a realist and he was clearly indicating it's not clear cut.

My question for the group is two-fold really: how often do GPs refer for ASD and of those referrals how many are not even ASD. If so it feels like we've been led down the wrong path. I guess I'd like to know that we've done the right thing and that health professionals rarely refer for ASD unless they strongly suspect behaviour meets a certain threshold. Any advice or experiences much appreciated.

Parents

  • If the there is evidence from a professional, then the GP won’t question a referral. What do you think? Does she sound like she’s autistic to you? What traits does she have from early childhood? Don’t hang on to the borderline comment. That just means they aren’t sure yet, and she needs assessing.

    Girls can often be dismissed as something else. That’s exactly what happened with my daughter. In those cases, you go with your gut instinct. Professionals aren’t always right. 
    I can understand your concern, but just wait to see what happens. 

  • in reply to Catlover

    Thanks for replying. Honestly autism hadn't occurred to us. We had no prior experience or knowledge about ASD. However, once the referral was made we did a lot of research and it felt like we were starting to understand why our daughter exhibits such extreme distress behaviours. Looking back we started to notice things escalating around 7 years old. She's incredibly anxious, has obsessive compulsive behaviours and has struggled a lot socially including being bullied. From what I've read girls hide in plain sight and for us the catalyst for her mental distressing peaking was the transition from primary school to secondary school. I just want to be able access support, whatever the outcome. My honest fear is that we'll come away with no real answers and our struggle to get support will continue to be an uphill one. Hopefully the assessment will signpost alternative issues (if that's the outcome) so we can get help.

  • in reply to NAS81879

    You are able to get help if your school has a SEND department, which it should. You can work with them to see what adjustments your child needs to cope with the school day.

    We waited 4 years for someone to believe us and get referred. Then, my daughter was fobbed off by the NHS. They said she was anxious because her school was large. They said she could smile, do impersonations of her sibling, shrug her shoulders, seem embarrassed and was attractive lol. During one of her assessments, they tried to get her to imply she had OCD. She doesn’t. She just likes ritual routines before bedtime. So, we came away without a diagnosis.

    I went private 2 years later. She has several in person meetings, and had many mental and physical tests, questionnaires and interviews (some with me). She came away with ASD, ADHD and Dyspraxia. All of which we knew anyway. 

    She’s no longer school age (18), but while she was in school, she did get good help from the SEND department, despite not having a diagnosis, and after this continued after she was told she didn’t have autism. 
    Im afraid there isn’t much help available from a certain age. Practically none for over 18’s. But there will be therapies can try. I think a lot of help will come from you, whilst you are continuing to work out what helps and what doesn’t. It’s a process, but things will improve. I know you’re probably feeling restless and worried, but things have a way of working themselves out. It just might not be the smooth sailing path you wanted.

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  • in reply to NAS81879

    You are able to get help if your school has a SEND department, which it should. You can work with them to see what adjustments your child needs to cope with the school day.

    We waited 4 years for someone to believe us and get referred. Then, my daughter was fobbed off by the NHS. They said she was anxious because her school was large. They said she could smile, do impersonations of her sibling, shrug her shoulders, seem embarrassed and was attractive lol. During one of her assessments, they tried to get her to imply she had OCD. She doesn’t. She just likes ritual routines before bedtime. So, we came away without a diagnosis.

    I went private 2 years later. She has several in person meetings, and had many mental and physical tests, questionnaires and interviews (some with me). She came away with ASD, ADHD and Dyspraxia. All of which we knew anyway. 

    She’s no longer school age (18), but while she was in school, she did get good help from the SEND department, despite not having a diagnosis, and after this continued after she was told she didn’t have autism. 
    Im afraid there isn’t much help available from a certain age. Practically none for over 18’s. But there will be therapies can try. I think a lot of help will come from you, whilst you are continuing to work out what helps and what doesn’t. It’s a process, but things will improve. I know you’re probably feeling restless and worried, but things have a way of working themselves out. It just might not be the smooth sailing path you wanted.

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