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

I don't have statistics but based upon my experience and what I have read on here GPs are often quite reluctant to make a referral for ASD. Your GP must have identified some clear autistic traits in your daughter before making the referral.

It may be that the psychiatrist just wants to remain non committal at this stage in the process. Another possibility is that he may not be fully updated on how ASD can present in girls. Even though the situation is improving there is still a strong gender imbalance in ASD diagnosis. Extreme anxiety commonly presents in autistic females. Also girls are much better at masking their autistic traits.

https://www.autism.org.uk/advice-and-guidance/what-is-autism/autistic-women-and-girls

Girls are much more likely to receive an anxiety disorder diagnosis when they are in fact autistic. Such an outcome would not be helpful to your daughter. She would go through life not knowing why her anxiety is so extreme and not knowing why she is different to her peers. It could have a very negative impact on her mental health and she may well decide to seek an ASD diagnosis for herself as an adult.

Have you researched autism sufficiently to form a view yourself? Do you know what autistic traits led to your GP making the referral?

Thanks for replying. If your anecdotal evidence on GP referrals is correct (and that is my hope) then going down the private route was the right thing to do. The reason for GP referral was based on continued mental health disturbances, depression, self-harming and other anxiety-led behaviours over a prolonged period of time. The referral came after many visits and peaked with what I believe was a kind of mental breakdown. I've read about autistic burnout and I think that years of masking at school (where she presents as neuro-typical) was too much for her to bare. The pressure she released at home was clear evidence of a major problem - it's been like living with Dr Jekyll and Mr Hyde. After the referral we decided to go private and did huge amounts of reading - as a result we changed our parenting style overnight and started helping her identify triggers for meltdowns and ways to manage her anxiety. This has helped massively which again strengthens the argument for ASD being a possible issue. It's so tough to get to this stage and be so close to some answers and I'm terrified of being told she "just very anxious" and then trying to get any future help will feel even harder as we'll have closed off this avenue. Also, with so many children experiencing anxiety post-pandemic it feels like a catch-all term for any one experiencing stress. But what we have to live with has almost destroyed our family several times. If we just get 'anxious' I'm also worried about how she will feel about her behaviour as she already thinks she a bit weird and I'm desperate for her to feel validated. Do you know if there can be a diagnosis for extreme anxiety that would enable someone to get help through school etc in lieu of ASD diagnosis? Thanks so much.

Thanks for replying. If your anecdotal evidence on GP referrals is correct (and that is my hope) then going down the private route was the right thing to do. The reason for GP referral was based on continued mental health disturbances, depression, self-harming and other anxiety-led behaviours over a prolonged period of time. The referral came after many visits and peaked with what I believe was a kind of mental breakdown. I've read about autistic burnout and I think that years of masking at school (where she presents as neuro-typical) was too much for her to bare. The pressure she released at home was clear evidence of a major problem - it's been like living with Dr Jekyll and Mr Hyde. After the referral we decided to go private and did huge amounts of reading - as a result we changed our parenting style overnight and started helping her identify triggers for meltdowns and ways to manage her anxiety. This has helped massively which again strengthens the argument for ASD being a possible issue. It's so tough to get to this stage and be so close to some answers and I'm terrified of being told she "just very anxious" and then trying to get any future help will feel even harder as we'll have closed off this avenue. Also, with so many children experiencing anxiety post-pandemic it feels like a catch-all term for any one experiencing stress. But what we have to live with has almost destroyed our family several times. If we just get 'anxious' I'm also worried about how she will feel about her behaviour as she already thinks she a bit weird and I'm desperate for her to feel validated. Do you know if there can be a diagnosis for extreme anxiety that would enable someone to get help through school etc in lieu of ASD diagnosis? Thanks so much.

Reading back my post I think it might be perceived as critical of your decision to go private. That wasn't my intention at all and of course you will do anything you can to help your daughter.

I hope everything goes well in the assessment and that your daughter is able to get the help she needs.

You're right it's very expensive but when you're desperate you'll try anything. Just hoping we can get her the help she needs.

I think depending on the outcome next week and her progress we'll pursue the NHS diagnosis anyway as we're still on the waiting list. Other than that we'll have to wait and see. Thanks for your time in answering questions.

A private assessment by a phalanx of clinicians would be prohibitively expensive. I was diagnosed by one person, as an adult, but he was a consultant psychiatrist whose day job was as the director of an NHS closed psychiatric facility. The only necessity is that whoever is doing the assessment is suitably qualified to give a diagnosis.

Presumably you decided to go private due to the long NHS waiting times. I am wondering if the diagnostic process will be different as a result. In my area the NHS diagnostic process involves separate assessments by different ASD specialists, over several weeks or months. All then have to agree at the end in order to give the diagnosis. Is the psychiatrist assessing your daughter carrying out the assessment alone? I would be concerned if the outcome depends upon the opinion of only one person.

It is common for girls not to be diagnosed until after they transition from primary to secondary school. As part of the diagnostic process they should be asking you about her behaviour when she was younger, particularly before starting school. From the DSM5 criteria "Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life)."

Masking and bottling up her emotions at school is also common. Assuming there is no other explanation for her anxiety, such as early trauma or abuse, then you are right to be seeking answers about what is causing it. I'm no expert but I think that your daughter will be able to access far more help in school with an ASD diagnosis than without.