Safety Nets 

When I first got my diagnosis of autism, I was assured by the experts that nothing was different. I was still the same me that had walked through the door.

And I agreed.

When I told family about my diagnosis, I told them it didn’t change anything, I was still me.

And they agreed,

When I told friends about my diagnosis, I said, “None of this fundamentally changes who I am”.

And they agreed.

Off we all wandered in our own directions, happy that I was still me, they were still them, and the world wasn’t fundamentally different.

I was yet to find one of the most profound differences being autistic made to my life. I speak a lot about how Autism is the key to understanding myself, about its positives, about the wonderful life-experience being so involved with my senses gives me.

But lurking in the background is something else.

You see, back when I was “normal”, I’ll call those days Before Autism, I was pretty supported. At work there was an employee assistance programme that offered us normals counselling and support for free.

Back then if I wanted to pay someone for therapy, that was always an option. Back then, if I was struggling with stress then I had options.

I’ve mentioned my naivety before too. I knew support for autistic people was lacking, particularly where I live, particularly in rural, sparsely populated areas, but I didn’t quite realise what that meant.

Before Autism the counselling on offer wasn’t perfect for me. I remember trying to work out what the counsellor wanted from me, and giving them that. I remember describing a Shut Down in great detail and being told simply that brains don’t work like that, before being given a coping mechanism that didn’t fit with my thinking.

In some ways it helped by showing me what didn’t work. It encouraged me to work out my own techniques. Once I had my diagnosis and the key to what my real problems are, that made life a whole lot easier.

Deep down I believed that there might not be extra support. I’m painfully optimistic. Irritatingly so at times. But I’d read enough to suspect that it was true.

What I wasn’t expecting, what really smacked me in the face, was that not only is there no extra support for me, the support that was in existence, the support that everyone takes for granted now, isn’t there either.

I now have less support than I had Before Autism

I now know that certain things like CBT (Cognitive Behavioural Therapy) should be modified for autistics. That there are therapies that may help deal with anxiety. That talking to someone trained in the way my brain works (or even better, an actually autistic therapist!) could help.

It all seems a bit of a no-brainer. Of course they would help. They help other people, why not me?

Why not me?

Because I’m autistic.

And no one in my area has the training. Not even the option of paying for it.

Not only is there nothing extra, but the support network that I had taken for granted Before Autism is gone.

I have no safety net in place.

Right now I don’t need it, but what happens if, when, I do? What happens then?

Did you know that so-called “high functioning” autistics have a suicide rate 9 times that of the average population? Link Here

That’s terrifying. I’m going to repeat it. Autistic people like me are nine times more likely to commit suicide (not attempt it, succeed at it) than everyone else AND we have a reduced support network.

So when I say, “There’s no support!” I’m not saying, “There’s no support above and beyond the level everyone else has!”, I’m saying, “There is often less support for adult autistics than there is for the general population!”

There are solutions. Solutions that would make counselling accessible. Include Neurodivergent Adjustments for all those training in Mental Health services. Include Autism as a necessary module, covering actual treatment. Make us boring and mainstream, make your services our services.

What we have now is not good enough. The choice between no counselling from responsible therapists who are unwilling to give advice when it could cause harm, or counselling from the potentially dangerous resource of those who are “willing to give it a go” with no understanding of autism.

The system is playing Russian Roulette with the Mental Health of Autisics.

I’m not asking to be treated as a special flower. I just want my safety net back.

Please?

Published by Rhi

41 thoughts on “Safety Nets ”

    1. You can indeed. I can honestly say that the reason I don’t currently need a safety net is because I have a diagnosis.

      I now understand myself so much better. I am happier than I’ve ever been. I work within my limits. But I know that during times of change or stress I will struggle, and knowing that I will struggle to find support at those times worries me.

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        1. The statistics are for those with a diagnosis. There obviously aren’t any for undiagnosed. Those diagnosed later in life usually have a history of depression/stress/anxiety.

          There are no statistics to show that a diagnosis would have an affect on suicide rates.

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      2. I say that because i have a friend with diagnosis but if in a way she found a reason for her being as she is, in the other way she doesn’t see a way out of something of her that she would emprove. That’ s really sad.

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        1. It can be hard accepting that the things that you find hard will always be difficult. But at least once you see that, you can work towards realistic coping mechanisms.

          It can be hard to learn not to fight against who you really are, especially when you’ve spent your whole life doing it.

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          1. Yes… i think i tried to be a supportive friend for her… i did my honest best… but she escaped away because i think she doesn’t feel giving good to me… but io sad for me

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  3. Hi Rhi,
    I do, unfortunately both hear you, and identify with you.
    As I mentioned before, I participated not long ago in a training designed to raise awareness of Mental Health, providing participants with specific cues meant to help identifying MH conditions such as Anxiety, Depression, Psychosis, PD, etc.
    I was also pleasantly surprised to notice that on the feedback sheets, they weren’t asking if the participants have been “diagnosed” with disabilities, but if they “consider themselves as having disabilities”, where MH, physical and social/communication impairment issues were placed in separate check boxes!
    I happily ticked the relevant boxes and requested some personal accommodation features for the duration of the course, which made my participation much, much easier than before…
    But the really cold shower came a bit later, as I noticed that nowhere in the textbook, or during training were ASDs even mentioned. When I raised the matter with the trainer, arguing that ASD people may have any of the mentioned MH problems as comorbidities, oftentimes overshadowing the real root condition underneath these problems, the trainer was quite shocked to acknowledge that ASDs are not at all dealt with in the course, but that she will raise the issue with her colleagues (hmm, good luck with that…).
    According to Wikipedia, “Autism spectrum or autistic spectrum describes a range of conditions classified as neurodevelopmental disorders in the fifth and most recent revision of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) published in 2013.”.
    So what are we talking about?
    Yes, ASDs are “neurodevelopmental disorders”, dealt with by psychiatrists and included in a “Manual of Mental Disorders”!?
    It looks like while it’s being categorised as a Mental Disorder, it’s actually a neurodevelopmental, therefore maybe rather a neurological condition, still left to psychiatrists and psychologists to “officially” deal with, which as in your situation, might not be the case …
    As for your, and our safety nets, it seems that we are forced into weaving our own nets if we want a catch of some safety.
    Not sure if that’s what I want, but what other choices de we have?

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    1. We are indeed left to find our own way. The support available is so hit and miss. There is some incredible support out there, but it’s just not available to everyone.

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  7. Another excellent entry. I didn’t think there would be post diagnostic support, not when there’s not much pre diagnosis. I’ve had a LOT of CBT, some paid for privately, but whilst it’s in a lot of ways helpful, it hasn’t really helped me to address core issues. I’m starting to do that now, armed with some of the information I’ve gleaned from reading other’s accounts of how they’ve coped with specific situations or specific issues. I toy periodically with having a Skype session with someone from Sarah Hendrickx’s company, particularly to help in stuff that affects work. So sad that this is perhaps the only option – and out of the reach of many people who don’t have the available finances.

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    1. At least that resource is there. But as you say, what about those who can’t afford it?

      What we need is a real framework of support in place. It’s not that everyone needs it, or needs the same things, it’s that there should be some level of access for everyone.

      Thanks for your comment 🙂

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  8. I moved from a place where there was support to somewhere more rural where there is virtually nothing. I was naive too. I thought a) I could cope and b) there would be more support here. I didn’t realise how hard it would be having to explain to health professionals not only that I am anxious and depressed but the link with my autism and what might be an autism-friendly way of helping me.

    I’m seeing someone at the CMHT later and I’m dreading it. I don’t need therapy as such or drugs but I do need practical support with getting accommodations at work, with socialising and with organising my daily life. There’s not that kind of support available. It’s not necessarily the fault of the people I see, they just don’t have the understanding and also the funding to offer the support I need. And with limited funds, they see me as someone who is high-functioning and working and therefore coping and not a priority. But I’m worried I soon won’t be able to cope without support which is why I’m asking for it now. I think I’m going to print off this comment and show it to them later as it explains things much better than I’d manage in words….

    Thank you for your post it came at a timely moment for me..

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          1. Amazingly there is a resource centre who can support me with work. It’s for people with MH problems but they do apparently “understand autism” – how much they understand, we’ll see but I feel much more hopeful. It really helped that I’d read your post and commented here first as I was able to organise my thoughts and communicate what I need in a clear manner. I thought I’d asked for this kind of help before but it obviously hadn’t come across as I was very anxious. Feeling more optimistic 🙂

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  9. Good luck with your appointment, aspiecat. You’ve described a lot of how I felt last time I paid for CBT privately (before I worked out my own autism). The therapist was very good, I’m sure, but she entirely saw a capable, professional woman. I was haltingly and ineffectually describing my lack of ability to cope with my job and she basically said she just thought I had personally high standards for myself which I wasn’t achieving. When what I needed was a recognition that my executive function is awry and strategies to deal with that in a work environment. I hope you get some of the help you need.

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    1. That’s exactly what CBT was like for mr. So invalidating. It made things worse as I started to believe that autistic traits were cognitive distortions…

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  10. This is my experience too. My college counsellors refused to see me (and my psychiatrist told them not to!) and I was refused the NHS long-term therapy I’d been referred to because my diagnosis came through while I was on the waiting list for assessment. They refused to even assess me!

    I was lucky in that a) I found a local private therapist with lots of experience with autistic people (who helped me a lot, partly by confirming that I was indeed autistic, which a diagnosis hasn’t completely convinced me of) and b) I had the resources to pay her.

    It’s appalling that there’s essentially zero NHS help for people with ASD and no learning disability. The LD services might have some expertise in autism (although I’ve never used them, so can’t know for sure) but the mental health services essentially washed their hands of me for anything beyond meds checks.

    It’s absolutely true that therapists shouldn’t attempt to treat outwith their capabilities and training, and I’m glad that every therapist I called without that training was clear about their lack of experience, but what would I have done had I not had access to the therapist I did end up seeing?

    In an area like yours, and many parts of the country are like yours, there’s nothing, whether you’re rich or poor. I think many people don’t realise that ASD is a bar to services that nearly everyone else can access, and why would they? After all, it’s completely illogical. Given the extremely worrying level of psychological problems in people with ASCs, it’s likely that people who need mental health services are more likely to be autistic than the general population. So why aren’t more mental health services a) adapting services for those with autism and b) making sure they assess their patients for ASD if appropriate? I’ve been using their services for half my life, yet I wasn’t assessed until I went and asked the GP for a referral. How many undiagnosed autistics are drifting through mental health services, not getting any better (and being implicitly blamed for their failure to recover)?

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  11. I don’t have any safety net. I also have hyyperacusis, so I can’t use phones, and haven’t been able to register for relay services. I don’t even have Poison Control.

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