Undiagnosed/ misdiagnosed

I'm trying to get a diagnosis at 63 and my experience so far is that the entire system is geared towards preventing it. After a bit of a struggle to see my GP he eventually referred me for a diagnosis, only to get a letter a few days later from a nearby health centre saying that I wouldn't be getting one. It had the look of a standard letter and wasn't signed by anyone. I scored pretty high in every diagnostic test, which they were provided with. I'm certain I'm autistic.

Hi Sarah,

I am new to this too!

I have struggled for a long time to understand why I am the way I am. At school the teachers would tell me I was schizophrenic due to my behaviour. I have researched psychiatrists, had life coaches and read extensively on self help books to try understand my thoughts and behaviours. My wife was actively pushing me to go to the doctors as she is convinced I have been suffering with depression and anxiety for years.

It all changed when my daughter was diagnosed with ADHD a couple of years back. As we researched ADHD, both myself and my wife recognised the traits as something I displayed, so I set off on the journey trying to understand if I had ADHD and got a referral from the GP. Somehow after a long wait, I was put forward for an autism assessment rather than an ADHD assessment. I explained this to the clinic put they advised I should proceed with the autism assessment after reviewing the documentation I had submitted. I must admit I was shocked when it come back positive. To get to the age of nearly 50, having never felt I fitted in, I had long made peace with the fact I think and act differently to others, but now I know why.

I have been fortunate I have managed with this undiagnosed, however a lot of things in the past make sense now. The depression people thought I have appears to be exhaustion from permanent masking. There have been points in my career when it appears I have sabotaged opportunities as my behaviour wasn't neurotypical, if I knew then what I know now I could have managed it differently. 

This is the first time I have spoken about my diagnosis which was about five months ago, but as I reflect on it, in that period I have adapted and managed myself better, and I have not had the periods of being down that my family and friends thought were depression. The critical part to this, and was emphasised to me by the autism practitioner, has been to not beat myself up and be kind to myself. I now walk away from situations that are causing me distress, I have embraced stimming and listening to head phones at work to increase concentration and turn down invites to go places without guilt for my own wellbeing.

Sorry for the long rambling reply, I hope it helpful in regards to your question, this has been useful for me.

Many years ago before I had my later in life autism diagnosis at age 52, when I was growing up in Rural Ireland, which a lot of this was tied in with traditional Irish Catholic social teachings, I was sent to an Irish residential centre for 9 months after over a year of psychological assessment after being bullied in school, in order to “punish” me for “attracting and inviting” bullying to myself, after which I held back a year in school and not allowed to do my Inter Cert nor Leaving Cert and instead made to do alternatives while being labelled as “mad” a “freak and a weirdo” and as having “mental health issues” and it was coming from a deliberate ignorance and point-blank refusal to understand autism in any other terms, except in that it needed to be carefully managed by the use of ultra strict Millitary style discipline - this was used as a further excuse to dictate my career paths over many decades and the problems massively increased over the years when I’d come out as gay, but was never really accepted by other LGBT people, which is why I cut all ties with them over 18 years ago 

same. I received a diagnosis only last week! took me to have children to realise what ASD is and I slowly realised there was a *lot* of things now and from my childhood that make sense viewed through this lens

Yes, it's the same for me- I definitely do have an anxiety disorder, but none of the treatment for it really 'stuck' until I realised I was also autistic and started working with a therapist who understands what that means. I've made more progress in the time I've been working with her and with the knowledge I'm autistic than I did in the 10+ years of standard anxiety treatment that came before.

I’m 43. Just thought I was despessed and was told had a chemical imbalance by G.Ps (I actually do but i also have adhd and dopamine transporters are prevalent in this)....put on anti depressants....nothing worked.

had an nhs assessment as I was flagged up for autism during a meltdown. Nhs said I was just mentally ill (I’m not)....non diagnosis (I will be complaining)....

went private and got seen by someone who knew what they were talking about and diagnosed autism/aspergers and adhd.

there’s a reason you are here and it all fits when you know. When you don’t it’s like being in limbo. 

just go prepared for an nhs assessment because some assessors have no idea what developmental Autism actually is and they will be looking for someone presenting with severe rather than subtle symptoms. Hopefully you get seen by a good team. 

Hi Sarah,

I am and was very like you. I struggled with understanding why people treated me in such a way and my diagnosis helped me to see things in a different light. 

Essentially I do suffer from anxiety, depression and get overwhelmed easily. These are all 'mental health', but now I can appreciate that because of my autism my brain is programmed to spot every detail, look for issues and worry about every eventuality. This hyper-vigilance has, in the past, made me feel odd, difficult and anxious. People around me not understanding me or giving me the time I need has made me feel depressed. 

I never appreciated or understood that, for me, it all stemmed from having too much input and not enough space or time to process that world around me. To use an analogy: If I was stood on a beach, in front of the sea, instead of worrying about a wave getting me and my clothes soaking wet if a big wave comes along I can prepare myself by embracing the waves. Knowing I will get wet and knowing it will take a while to dry off, but I won't be stuck on the beach forever, I can leave the beach when I want but also the beach is a fun place to be. 

In my analogy, the beach is 'going out somewhere', sea and wave are the incoming information and emotions. If using this analogy the best thing that has helped me is to talk to those around me to tell them how I feel about 'the beach' and to help them recognise the signs of a big wave coming in, recognise when I've had too much and to help me find a way to 'dry off'.

I really hope my analogy makes sense. I suppose what I am saying is you can't stop the tide but it's not your fault. You will grow to understand and spot the things that trigger you and can then choose when and how much exposure to that you have.

To put this into real context: I love going to my local cafe, the people are lovely and I love it there. But I recognise that when they are really busy, the staff are stressed and there is lots of noise I can become overwhelmed by a 'wave' of emotions. So I can manage this by try to go there when it's quieter, telling them about my autism, using headphones to block out some of the noise, not going there when I am already overwhelmed and listening to my wife when she suggests it might be time to go.

Anyway, I really really hope that this makes some sort of sense, I don't normally write my analogies down.   

Sorry you have had to wait for such a long time. Have you thought about using Psychiatry-UK under the 'right to treatment'. They were a lot quicker than my local ASD service. 

I had my assessment last year at 49, knowing what I know now I am not surprised I went undiagnosed for a long time. I have had life long anxiety and I was very, very good at masking it, Unfortunately this lead too a burnout a year and a half ago which was originally considered to be stress. 

However I do think my psychologist I saw after my burnout should have been able to identify me as Autistic as there were plenty of obvious indicators. 

I wouldn't say I was misdiagnosed with mental health stuff, because I absolutely had/have the anxiety disorders I was diagnosed with. But them missing the autism side meant that the treatment I've received had less chance to work since it's obviously a massive part of why my brain ended up in such a state.

I hope that now with that information I can get helped out of this disastrous cycle.

Thank you for your replys.

It is wonderful how it is more recognised now. Still have a long way to go for women with autism. Thank you for those insights. 

Hi and welcome. I took 50 years to realise I had ASD and was just not mentally unstable. Those of us 40+ never got a chance of a diagnosis in our younger days.

Hi and welcome.

Sadly, mental health services for autism are lacking and certainly the understanding of autism is very much lacking.  I was wrongly told I wasn't autistic ten or so years ago.  I put me in a very dark place.  I am on the wait list for a proper assessment (likely still another two years away ..isn't the NHS great)  but I have confirmed for myself that I am most definitely autistic.

Fortunately there are now many online resources, in particular for me, youtube videos, that go into great detail and really helped me to understand my 'challenges'.