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Waiting for Autism assessment & just coping (sorry long one as 1st post)

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I'm a 40 odd year old woman (2 years in on the waiting list for an assessment) 

I was born with Hydrocephalus, but back then in my country there wasn't a lot of information on long term effects It's only a few years ago that my poor coordination and lapses in concentration was suggested to be linked to the above There's still research ongoing to it's possible links to a higher risk of developing Autism

My whole life it has felt like I'm 2 different people and am living a lie Growing up I remember a clear moment when I sat with other small children on a playground and was in awe at how easy they found it to talk to each other. I felt like a spectator so I started listening to the questions, answers as well as study how they acted and gradually got better and better at copying them, especially as I got to my teenage years, as appearing to fit in felt much safer than standing out All this was exhausting so I missed a lot of time from school to be alone. 

At work I've been a manager for the same company for a few years Being super organized and preplanning as much as I can often means I'm working unpaid overtime but think it's a coping mechanism as did the same in all of my previous jobs. It is a fast paced environment and as I constantly need to be focused & pro active as well as communicate with a lot of individuals daily while appearing confident and bubbly, I feel completely detached and drained when I arrive home. I've looked at applying for less stressful work but it feels at my age to retrain and a getting used to a new workplace. Due to rapid expansions I've asked for a demotion this week as worried I'm heading for a break down, which I can't admit to my employers. I can't afford to lose my job, but feel trapped. 

In  between shifts the only thing that resets me is being fully wrapped in a blanket in a dark room with total silence for 2 hours which I couldn't do if I worked straight hours. In my personal life I've always struggled with sensory issues and life admin and often will leave anything important til the last minute and am a 100% introvert So complete opposite. Even as a small child I preferred my own company and as an adult I enjoy reading, gardening, art, swimming, writing, photography and spending time with my dog. I feel like I can breathe when surrounded by nature and animals, not people. I've tried to examine my feelings and know I am more focused and content when left to enjoy the above in peace but over the last year I have little energy or enthusiasm. 

I have had no proper mental health support from my GP surgery for years after working up the courage to be open about my past, but have lost confidence in asking again as their only solution is medication A referral to Time to Talk was useless as they said couldn't help as my backround/ childhood issues are too complex (I suffered from neglect, sexual & mental abuse as a child as well so might have possible Ptsd) which made me feel embarrassed as they told me to go back to the gp which I couldn't face again.

So an absolute knot nobody wants to unravel, but I decided to go one step at a time with the Autism assessment coming first Right now I'm in limbo waiting as unsure what mental health support I have access to in the meantime as the waiting list is very long in my area? Any advice would be gratefully received 

  • Dear Rowi,

    Welcome to the online community, it is great to have you here. I can see you have already had a great response from Bunny, I hope this helps you feel supported here. I haven't included any signposts for assessment as you already have some great ones!

    I am sorry that you have been struggling with your mental health and haven't been receiving the support that you need. I have included some links that may be worth taking a look at:

    Post-traumatic stress disorder

    Seeking help -this has guidance on how to approach getting some additional support!

    I also have included some advice from our Anxiety guidance, that I feel can be helpful, some of the tips may be useful for you and some might not work for you.

    Below are some general tips and guidance from autistic people and professionals that you might want to try. 

    Understand the triggers

    Keep a diary to help identify when you are anxious, and what might make it worse.  

    Monitor and manage your energy levels

    Be aware of your energy levels after social interactions and other events/situations that you may find tiring or difficult.  Recharge by taking time for yourself and doing things you enjoy. 

    Make the environment work 

    Make adaptations to the environment where possible, for example lower unnatural light if too harsh. 
    Try noise-cancelling headphones to reduce sensory overload.  

    Self-soothe

    Use sensory tools and stimming to reduce anxiety levels, if that works for you.

    Relaxation and calming activities 

    Try relaxation methods such as meditation, mindfulness, yoga and exercise.  

    Visual schedules

    Visual schedules to help structure the day and reduce uncertainty within your day.

    Use an app

    The following app offers personalised support with anxiety.

    Molehill Mountain – includes: 

    • a system for tracking mood and identifying triggers
    • evidence-based tips on how to self-manage anxiety levels.

    I hope some of this is helpful!

    Best wishes,

    Olivia Mod

  • Hi and welcome to the community.

    You might find the advice here helpful - it includes a section about accessing support:

    NAS - What can I do while waiting for an autism assessment?

    In respect of accessing mental health support, I would encourage you to follow the advice that you've been given to seek further support from your GP.

    There's absolutely no need to feel embarrassed that Time to Talk couldn't help you. I see it as a good thing that, rather than carrying on and trying to help you despite knowing that they're not equipped do so (given your more complex needs), they identified that you instead need more specialist support, and encouraged you to seek it via your GP.  

    Perhaps you could summarise what happened with Time to Talk in writing, along with explaining your struggles, and send this to your GP ahead of booking an appointment?

    In respect of having been waiting two years for your assessment, if you live in England, then you could also ask your GP to re-refer you using the Right to Choose pathway (RTC). 

    In England (only), this enables access to certain, approved, private autism assessment providers who typically have much shorter waiting lists than the NHS, but with your referral and assessment still fully funded by the NHS. You don't need a reason to request this, or to justify it (although the wait time alone is good enough reason) - this is a legal right and you would just be choosing to exercise it. 

    For example, if you were to choose Psychiatry UK, whose waiting times are currently under three months, their process is explained here. You can prepare the required materials - an AQ-10 form and accompanying letter - and use them to request the re-referral:

    Psychiatry UK - Right to Choose Autism Assessments > How to apply

    More information is available here:

    NAS - How to request an autism assessment

    There's a list of RTC providers for autism at the bottom of this page, for example:

    NHS Sussex - NHS Right to Choose: for Autism and ADHD Assessment