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Should I refer myself for an assessment? + Impostor syndrome + what to say to my parents?

NAS73035

Hi there, everyone. I'm sorry if this post isn't permitted - I'm not an adult yet but I will be in a month from now, and so I wondered if it was worth self referring to the Tower Hamlets Autism service run in collaboration with the National Autistic Society.

The reason why I want to self refer is because I looked widely into autism traits in women for the past 5 months, looked at the DSM-5 for autism and its many comorbidities, and concluded that this just fits. I don't know how exactly to explain it, but it explained things such as my aversion to so many foods, my gastrointestinal issues, my hyper-fixation on a lot of things and how part of me enjoys socialising at times but afterwards I just need a lot of time to recover. I don't know if this is allowed but I actually made a document listing my symptoms in accordance to the DSM-5 along with comorbidities I think I may have that I also think are worth looking into. I can PM it to anyone who would do me the honour of reading it.

This brings me onto the main part of my post. I want to self refer for an autism assessment. Throughout all my time in CAMHS and going in and out of psychiatrist's offices, GPs and hospitals, I never felt like the words I was being given helped. CBT didn't do very much for me - I actually completed the course on my own while my therapist was on leave, and she complimented me saying I did all her work for her, but I didn't feel any better. I also did CBT for my OCD with my current therapist, and I appreciated the sentiment but it didn't necessarily alter any cognitions I had. If anything, I just doubled down on my analysis and broke down more. I feel like unless I don't try something else, I might stay in a strange state of not understanding myself forever when this is the closest I've gotten.

However, my therapist doesn't want to refer me. She thinks that because I show good social reciprocity and I make eye contact, I can't possibly be autistic. So she ended the conversation there very quickly. I understand, but at the same time I want to push more. But at any rate, my CAMHS time is nearly up as I turn 18 a month from now, so I was considering a self referral to the Tower Hamlets autism service. I would just like to know if anyone has had any experience with this system, or with the NHS in general, and if it is worth going, especially with some GPs and the outdated views on autism in women? Anything I can say to my parents that will convince them will also be greatly appreciated.

Thank you very much to anyone who reads this.

  • in reply to Ann :)

    I will definitely make a list and I guess I could see about mentioning it to my therapist, I’m just concerned that she’ll bring it up with my parents and I just don’t know if they’ll believe me or understand why. They didn’t react in the best way when the psychiatrist mentioned it in his report. 

  • in reply to Ann :)

    Hi, You could also try talking to your GP or mental health team about having an assessment. Especially if the psychiatrist already suggested that he thinks you could be autistic. If it helps you could maybe even make a list of the reasons you think you could be if that is easier than talking about it. Then the assessment would be free. The reason I didn't go for a public assessment was because I was moving from one country to another too often, so I realised I would probably never make it to the end of the waiting list in the next years as I would move again (I was on the waiting list in Luxembourg and Germany)- Also I was struggling a lot with my health and wanted answers sooner. I was therefore very happy that I could see Sara and then receive an official diagnosis through the psychiatrist she works with. 

  • in reply to Sky

    Hi, I did it all virtually over Zoom. I am not sure about parental consent. I think the best thing would be to just ring Sara or write her an email. She is very friendly and will be able to answer all your questions- I actually phoned her first and we talked briefly and she then emailed me all the details and information (including her hourly rate as she charges by the hour, so the final price will depend on how long the assessment takes which varies person to person). I then actually took some time to think it all through as it took me a while to decide if I wanted to go ahead and if I had the necessary funds. I think regarding the cost it's probably best to ask Sara as I guess the rates could change but from what I have seen on this forum, it is definitely in the more affordable range for a private assessment. I think the easiest would be to just contact Sara if you think you might be interested and want to gather some more information. 

  • in reply to Ann :)

    I just realised I’m going to have to pay myself as well…how much was your pre-diagnostic assessment? Curious to see the cost of prices. 

  • in reply to Ann :)

    Thank you so so much. Is Sara Heath in person? Also do I have to have parental consent? Thank you for sharing your experience :) 

  • Hi, If you do not feel comfortable contacting your GP, you could also try contacting Sara Heath: https://www.shropshireautonomy.co.uk/autonomyplus/pre-diagnostic . She offers pre-diagnostic assessments- she will write a report summarising her findings and opinion at the end. If she believes you are autistic she can arrange for you to see a psychiatrist experienced in diagnosing ASD, who will be able to undertake an assessment (if you consent he will have access to her report). I was diagnosed through Sara and I had a very positive experience- Sara has a lot of experience and it also felt good to finally talk to someone that understood my struggles and how I was feeling. I was abroad at the time and unlikely to ever make it to the end of any waiting list as I was moving country too much. I just wanted to know if I could be autistic and I hadn't even realised that seeing Sarah could act as a first step to getting a formal diagnosis in the UK. I've now moved back to the UK and I have now been formally diagnosed. Alternatively you could try taking your list to the GP and see if you can get referred for an assessment. The advantage of seeing Sara is that the wait is less long. 

    Sadly it is very common for autistic people to receive many other diagnoses before anyone realises that they are autistic. I felt like I was collecting diagnoses at some point though I often felt like many of them didn't quite fit and I felt like noone could really help or understand me- I saw so many mental health professionals and even spent 8 weeks inpatient and noone realised I could be autistic . For me it took a dietitian to suggest that I could be autistic and once I started researching autism it made a lot of sense (and other professionals also agreed once it was pointed out to them). I am still confused why noone picked up on it sooner. So I wouldn't let myself be put off from getting an assessment just because you have other diagnoses and because your mental health professionals have not picked up on it. 

    I hope you manage to get an assessment. It is a huge thing- I am still getting to terms with it but I would say overall for me it was good to know I am autistic, though it is also very confusing and overwhelming. 

  • Hello, I don’t know if this is still being checked… but everything you just said is exactly what I’m feeling. I’m receiving treatment for OCD from CAMHS, I’ve just turned 17 and I think I’m autistic. I’m also female and I don’t know what my parents views are about getting assessed. The CBT isn’t helping at all and I just feel stuck and lost. I’ve thought about it for a while and everything fits, I feel so definitely that I am autistic, I just feel like I need an official diagnosis because I feel so lost and I don’t know whether it’s true. It was suggested by a psychiatrist that my ‘presentation might indicate that’ I am ‘on the autism spectrum’. But nothing was ever followed up, I was only diagnosed with OCD. I haven’t brought it up with my therapist at CAMHS because I’m too scared she’ll bring it up with my parents and I don’t know how to explain it all or how I’m feeling. I was wondering what you did and how you went about it? Your words make me feel like I’m not alone because I feel so hopeless right now and I don’t know what to do. 

  • If you feel it's a possibility, especially if you have unresolved MH issues CBT etc isn't helping with, I'd approach your GP.  S/he would want that list of reasons and will ask you to complete an AQ10.  (You could probably find one of those online).  Your GP should give you a fair hearing.

    Mine referred me no probs, but the NHS waiting list is long.

  • Hi NAS73035,

    Thank you for sharing this with us. You may like to look at our information about autism spectrum disorders:
    https://www.autism.org.uk/advice-and-guidance/what-is-autism

    If you were interested in finding out if you are on the autism spectrum, you would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis

    Furthermore, it is important the professional you see has experience of autism spectrum disorders. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section: http://www.autism.org.uk/directory.aspx

    If you have further questions, you may like to contact our Autism Helpline team. They can provide you with information and advice about getting a diagnosis. You can call them on 0808 800 4104 (Monday to Friday 10 am to 3 pm. Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an adviser.

    Hope that helps.

    Kindest regards,

    Eunice Mod