Published on 12, July, 2020
Hello,
My daughter has been suffering with her mental health since starting secondary school. She has been diagnosed with several mental health issues over the last few years - anxiety, OCD, triciltillamania, depression, self harm and anorexia.
My gut has been telling me that she has displayed autistic traits and behaviours for years but she was assessed by CAMHS Eating Disorder team 3 years ago and was told that she was not autistic. However, I am now really questioning the assessment - it literally was a sheet of questions that they asked me to fill out. I have since done a lot of reading on autism in girls and I am convinced my daughter is.
i don’t know what to do now. I have broached the subject with my daughter but she doesn’t want to see anyone else or talk to anybody else who doesn’t understand her. Her experience of CAMHS has put her off therapy as she had a string of therapists who did not get her and let her down constantly.
She has an ED private coach now who is great but I am concerned as the treatment should be adjusted if she is autistic.
I would love some advice from someone on what to do now? I know that she is 17 and I can’t make her do what she doesn’t want to do but I feel helpless and alone and just want to make sure that she gets the right help, especially as anorexia is so debilitating and life threatening.
I feel that if she is understood, it might help her to want to recover.
Hi, I can relate to this a lot- I felt like I was collecting all these diagnoses and seeing all these professionals but no one was able to help and it sometimes even made my situation worse. I was slightly older (18 years old) when I started accumulating my massive list of mental health diagnoses : depression anxiety, various eating disorders (which was really unhelpful as my eating issues were mainly caused by IBS, autism related issues and possibly ARFID but I wasn’t believed that I was not deliberately trying to loose weight and it was really damaging). There was also a suggestion I might have OCD. I would go through phases of what I now know was autistic burnout and I ended up really ill physically and mentally on several occasions. When I was 24, my dietitian who is one of only professionals that has made any positive impact on my physical and mental health approached me and said that I reminded her a lot of her autistic patients, that she has suspected for a year but didn’t say anything yet as she wanted to be more sure and wasn’t sure if it was her place to suggest this. At first I just didn’t really look into it- I thought, why do I need another label or diagnosis? I’d had lots of those and it didn’t really help me make sense of things, it never really fit and people seemed unable to help me anyways. But after 2 weeks, i ended up reading up about autism and autism in women and it made so much sense. That was followed by lots of questionionning myself, feelings of imposter syndrome etc. But I did approach the psychologist and psychiatrist I was seeing and they agreed that I should have an assessment. In the end as I was moving countries a lot I was diagnosed privately via Sara Heath and the consultant psychiatrist she works with. This was a really positive experience. I was 25 by the time I was diagnosed.
I can relate to your daughter feeling that there is not much point in seeking yet another diagnosis when so far getting diagnoses and support has not been particularly helpful for her. But at least for me knowing that I am autistic has been extremely helpful and I wish I had known sooner. Sadly there is no (or barely any) specialised support available for autistic adults via the NHS, but it really helps to better understand yourself. it also means you are entitiled to adjustments at school university or work if necessary. Knowing I am autistic has also been very helpful in terms of addressing my issues around food- for years I was being told I had anorexia nervosa, and i tried to convince myself this was it even though deep down I had always known it wasn’t true and my dietitian tried to convince me for years that I didn’t have it. It was really damaging to be given inappropriate advice and I am now finally able to better understand and deal with my issues around food. And even the NHS has now acknowledged I was misdiagnosed. Of course autistic people can also have anorexia nervosa though i think it is still important to take into account that the individual is autistic.
I’m not sure if any of this is helpful as I’ve mainly just shared my personal experience. For me knowing that I am autistic has helped a lot though I am still trying to figure out how to best navigate life as an autistic individual. Being diagnosed hasn’t allowed me to access more specialised support and after all of my previous experiences with mental health services, I’m also mistrustful of it- but that’s ok. The most important for me is that I know that I am autistic and can better understand myself. It made me feel less alone too. I wish I had known sooner- I think that might have avoided a lot of hardship and issues but I’ll never know now.
If you are considering going for a private diagnosis which is fully recognised by the NHS and also reasonably affordable I can recommend being diagnosed via Sara Heath. She is autistic herself and can conduct a prediagnostic assessment, upon which she will write a report. If she believes you are autistic, you can arrange to see a consultant psychiatrist that she works with who will conduct his own assessment (using the report as a base) and who can then give a formal diagnosis if appropriate. It was really good to talk to Sara as she not only did the assessment but was also able to explain a bit about autism. Here is their website in case you want to take a look (i would just email or phone her if interested and she can give some more information)
https://shropshireautonomy.co.uk