Hello to all. Your advice is needed

My name is Ruth currently living in the Oxfordshire area.

I am a mother of a 16 years old girl whom we now suspect has Asperger's Syndrome. The more I research the symptoms, the more I am becoming convinced my daughter needs to see a specialist capable of confirming our suspicion....but where exactly to go? We are a family of low income - so we cannot afford thousands of pounds for a diagnosis. So, my question is, do any of you know where a family with low income can take their 16 years old daughter for a proper diagnosis of Asperger's Syndrome?

I would HIGHLY appreciate any direction on this matter.

Many thanks

Ruth

  • Start with the GP. It will be a lengthy process (took me three or four years, though that included Covid etc) but you will get there. You won't need to pay. The GP will probably just refer you / your daughter to the local mental health services. That happened to me, I did a screening assessment with them, they felt there was enough reason to believe that I may have autism, I was then on a waiting list for a full assessment.

  • Thnak you! I highly appreciate what you shared with me. Very valuable

  • Juniper, I deeply resonate with what you shared! I love Jung's philosophy and points of views about psychology and human behaviour in general. I personally believe we have a long way to go before the medical system adknowledge how truly magnificent, mysterious and divine humans are! I appreciate the information

  • With females, their Autistic Neuro-Wiring is not always apparent and many women end up undiagnosed for a wealth of reasons. Only 100 years ago most women weren't allowed further education, if any at all and most might have been much more naive. This might create a confusion of a lack of sublimation into maturity with autistic reasoning. We 'mature' a different way. Instead of collecting sub-text and social cues, we might study principles of good manners and a trove of philosophical and psychological principles. We might be overwhelmingly compassionate and frightened of these emotions only to appear stoic in confusion. We might stay more silent than our peers for reasons of safety, genuinely sensing we are a mismatch for society.

    While in some medical situations a lack of maturing with, I might call it 'telepathy' is a symptom, I would call it a difference. Jung called it a difference. We learn differently. We might have trouble identifying emotions and need to work out what the function is, the cause and effect, the rules of relationships, the roles and then work out how we should feel. A parent who is callous toward my sadness is warrants a different feeling from a stranger. In this, we just examine the world different. 

    As someone here has said, Asperger's Syndrome is not longer in use. But what I think you're saying is she's possibly intelligent and probably adopting behaviours. 

    Australia has set this up https://www.yellowladybugs.com.au specifically for females. This chap on Twitter is quite good https://twitter.com/commaficionado/status/1553732283189891072 

    The more you can understand the better, to be honest. Allow her more room than you can imagine to focus. To get into a flow-state. Remind her to always do one thing at a time and when emotional stop what she is doing and just regain herself. It is the degree of intensity of impact that makes us different. Sensory impact includes physical, emotional and psychological - though we may not always have the language to express what we sense. Help her find things she is intensely interested in & allow appropriate space for her intensities / passions. Some new science has suggested our hyper-connected wiring and gamma wave oscillations are what make us unique. The brain is picking up details and making connexions but at the expense of being hyper-focused in just the semiotic / language compartments. We are different design of human! And absolutely necessary. This piece gives a rough idea of that: https://www.huffpost.com/entry/autism-brain-symmetry_n_5841d0b1e4b0c68e0480b469/amp 

    While it appears we have a long way to go in making better communities, one thing which has helped me in building and maintaining friendships has been finding rules for engagement. The library is a great place to find materials to learn the art of investing into a friend. Learning how to build proper boundaries with others and what warning signals to look out for or how to trouble shoot a problem. While NeuroTypical individuals can send what seems like "secret codes" for these rules, we will make conscious efforts to express consideration. Now, a word of caution. Social engagements will take me out of my work entirely. I cannot socialise and relax around others and also do the things I am paid to do. It is a different part of the brain. I believe the design for NeuroTypicals allows them to do this. As mentioned earlier, always reinforce focus, one thing at a time.

    These are a few other online communities

    https://neuroclastic.com 

    https://autistic-village.com

  • There are autism tests available online, AQ10, AQ50 and RAADS-R tests. It would be useful for your daughter to take them before you raise a referral with your GP, as test scores within the autistic range will give you useful leverage on your GP.

  • Hi Ruth,

    I would go to your GP and talk about your concerns. There is a long NHS waiting list but it’s worth seeing how long the waiting list is in your area - because it can differ substantially from area to area. If you’re on a low income please don’t feel pressured into going for a private diagnosis. There is no sudden availability of support or help WITH a diagnosis - so it won’t substantially change things for your daughter in many ways. If you both feel your daughter is autistic you can already use that information to start researching how best to support her.

    good luck! 

  • Hi, If you are considering going privately, you could contact Sara Heath - https://www.shropshireautonomy.co.uk/autonomyplus/pre-diagnostic

    I personally had a very positive experience with her. I initially just phoned to get some more information and in the end I decided to go for it in addition to being put on the waiting list in my area. I’m very happy I did- I am moving countries too much to ever make it to the end of a waiting list and it was great to talk to someone that understood. 
    Good luck! 

  • I believe that 'Asperger's Syndrome' is no longer given as a diagnosis by the majority of diagnostic services. 

    It says on the NAS website https://www.autism.org.uk/advice-and-guidance/what-is-autism "Asperger syndrome is a diagnosis previously given to certain autistic people. Autism Spectrum Disorder is now the most commonly given diagnosis."

    I think the change in terminology arose from the controversy surrounding Hans Asperger and his links with the Nazi regime.

    I asked about it when I received my diagnosis of ASD. I was told that Asperger's is no longer used but that had I been assessed before the diagnostic system changed I would likely have received that diagnosis.

  • Hi Ruth, I’m looking at using a centre called Autism Oxford. They have a YouTube video explaining the process, the current cost is £1800. Hope this helps. Regards Roy.

  • my friend was diagnosed here Diagnostic Assessments - Autism Oxford UK Limited, I'm not sure on pricing as we didn't discuss it however she only ever spoke positively about them (and she is very honest so she would have definitely said if she didn't like themJoy)

    Also, support after receiving a diagnosis wasn't great for me, so you might want to work out what you want from the diagnosis. you don't want to be spending thousands and still not getting any support for her.

    Alisha xx

    P.S. feel free to pop me a private message if you or your daughter wants to chat anything through

  • Hi Alisa

    I really appreciate your reply. My daughter's story is long with many details not worth mentioning, at least not now. I  may do in the future if my daughter is diagnosed with the condition I am seeking help with.

    Privately, do you know where I can take her?

  • If you don't want to pay then you will need to visit your GP and tell them your concerns, the reasons why you believe she has AS and then they should be able to start the process. it may be a long wait, in the mean time she could always join us here and chat as i believe 16 is the minimum age (someone will have to confirm that though because i could be wrong).

    Good luck with the diagnosis process. Has she done her GCSEs this year? i was supposed to do mine last year but covid stopped that

    Alisha xx