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

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.

This is so like our story. I had a period where my daughter was about 7 where I remember my husband I am questioning could she be autistic, but we never seriously considered it. It was suggested after the wheels fell off when she hit high school and then developed FND.

in my head, she was borderline. At diagnosis, she scored 12 on the ADOS (I know that doesn’t indicate ‘severity’) when 7 is the cut off so well within it. They stated she had ‘moderate autistic behaviours’. I guess my daughter is an epic masker and clearly struggling more than I ever thought possible. 

I was scared it would be a no as then we’d have no insight as to why she was struggling so much.

obviously, I have no idea which way things will go with your daughter, but there is my anecdotal advice that they can mask better than you thought possible.

x

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.

Well for what it's worth I hope that's not the case. Hopefully we'll get some answers.

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. 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.

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?

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. 

i think its easy for them to refer anyone, just that you end up never hearing from it and your referal will probably get lost along the way and years will pass and you will remember nothing got back to you about your referral lol

gp refer you for anything, then dont care as its out of their hands once referred. place they referred you to has a 5 year wait que, they lose your details and refferal along the way and never get back to you.... honestly you probably did the right thing going private...