I'm new, go easy on me.
So yesterday I finally bit the bullet and went to the doctors to ask for a referral for a diagnosis. I've never felt normal, never felt I fitted in, always struggled around people. Somehow because I was academically good I got shoved down the office work route. Offices are my personal hell. With people everyday, small talk, being in sight and worst of all PHONES. Yesterday was a bad day for me there were a lot of people off because of the weather. This meant less people answering the phones which meant I was expected to answer a few. Cue me doing no actual work due to the debilitating fear of the phone ringing and me having to answer it. A few trips to the toilet to calm myself down and cry a little (but not too often because that would look weird). I logged on to my doctor’s website and booked an appointment for after work.
At the appointment I said that I wanted a referral. The lady seemed almost dismissive (“it’s not that simple”). She asked me why I thought I was autistic. I stuttered, choked and mumbled before handing her the 3 sheets of a4 I’d typed knowing full well that I wouldn’t be able to speak. On the sheets I’d said that I want to get a diagnosis so that I would know I’m not just ‘weird’ that there’s a reason for me being like I am, so that I could tell my employers (by email obviously, probably on a day off) “this is why I struggle so much, can you put anything in place to help?”, so that I can maybe get support if there is any. That didn’t seem to be good enough for her. She said she’d write the referral letter as persuasive as she could but because I function (i.e. I’m married and hold down a job) that they wouldn’t see any clinical benefit in a diagnosis and would probably refuse to see me. My head was screaming “I barely function, every day is hell, I spend the days wanting to cry and the nights stressed about going back the next day and they won’t see me just because I haven’t given up yet?! So they’d rather wait until it gets too much for me to think about helping?!”. My mouth just let out an involuntary scoff at being told I function. Seriously, is there any wonder suicide rates are so high (NB I am not suicidal, I feel a bit wrong for mentioning that, sorry)?
Anyway. She’s sent the referral to the hospital mental health team. My question is, is that the right place to refer me to? Does anybody know how long it usually takes to hear from them?
Second question is, if they do refuse to see me as she thinks they will, what can I do about it?
I have just been diagnosed, it took about 2 years and was a battle. I’ll tell you my story, hopefully so you know you are not alone. Others will also tell you what a battle it is. I became aware that I could be Autistic about 5 years ago, but kept putting it to the back of my mind. My great Uncle who was one of the code breakers at Bletchley Park in the war. He had Aspergers, although was never diagnosed,, and as a family it was alway know and accepted that he was a bit different and that his very high intelligence didn’t match his other abilities. It has been since his death that we as a family came to realise that He showed clear traits of Aspergers.
Anyway I’ve always been considered wired, bossy, anti social to point of being rude, libel to overreact, meltdown etc.(I’m 56 by the way) I really struggled at school, I have always had the feeling of never really understanding all the rules that others seemed to know by instinct. I never fitted in, was always on the side lines of anything social. Although I got through school, I went onto college were I trained as an NNEB nursery nurse, at college it was picked up that I had Dyslixa, after college I managed 2 years of working in a special needs hospital school. I loved the adults and children I worked with, but interactions with staff and others was a massive problem. Then I moved on to a nanny job, again I could do the work with the child, but interaction with the parents. It all feel apart. I lost that job, I just couldn’t cope with the social demand and living away from home. After that I never managed to keep a job. I struggled hugely to leave home, it took 6 to 7 attempts as I couldn’t function on my own. Over the years I have survived, I have not thrived.
When I started to realise that maybe it could be due to ASD I at first kept putting it to the back of my mind, eventually after much reading and researching, I just knew that it was ASD. I felt that although I had a good GP she wouldn’t have believed I could be ASD. I looked on line to see what to do. I realised that private was going to be expensive, but I figure I could save up. I found that the NAS diagnosed clinic would take a referral and tell you if they thought you needed to be assessed, so I filled out their form, wrote a high about of details as to why I thought I could have an ASD. Sent it off. They reviewed what I had written and advised an assessment, but the cost was out of my reach, I was told I should contact my GP. So reluctantly I wrote her a letter explaining I would like a ASD referral, sent all the information I’d written. My GP rang me back. basically said, that yes she could see I possible could have an ASD, but wouldn’t refer me because there was no funding. I tried to argue my case and was told, I was functioning all right, had reached my 50s so if I did have an ASD I was only mildly affected. When I pointed out that I had lost every job I’d ever had due to my social inability, had ‘fail’ to cope with all the demands of life, had attempted suicide several times, etc etc. That was not milly affected. But she wouldn’t listen. Stating there is no funding to refer you.
Because I didn’t know what to do next I looked up on line Autism Diagnose for Adults. I came across a .gov site. It explained that as an adult I was intiltled to be Assessed. There was a form that could be down loaded and it said take this form to your GP or health worker, or fill it in and send it yourself, (that apparently was a misprint) but I thought I’d have a go and see what they said, the worst that can happen is that they would say no. It went to an Access and Assessment team. They reviewed what I had written, I’d sent detailed info. They felt I should be assessed so sent my referral to the Adult Autism diagnoses team, who sent it back, because it hadn’t came from a GP. When the Access and Assessment team rang me to tell me the Autism diagnoses team had sent the referral back because it had not come from GP and I needed to go to my GP. I stareded to explain that my GP had already refused me, then just burst into tears, I didn’t mean to cry, but I was just so frustrated. Anyway the man I talked too said he’d see what he could do to help. He later range me back and said that if they, the Access and Assessment team did a mental health assessment then they could use the mental health report to refer me for a ASD Assessment, if appropriate. That is what happened. I waited 4 months for a mental health assessment, I took all the information I had already written along and we talked about why I thought I could have ASD. They agreed it was a possibility and made the referral for me. I waited over a year on the waiting list of the Autism Diagnoses Service. At the end of January this year, I was diagnosed with ASD aka Aspergers.
The Autism Diagnoses team were wonderful, the Doctor I saw was brilliant, he knew and understood Autism and how it presented in adult females, He was really cross with my GP, apparently ASD assessments are centrally funded (this is in Suffolk so don’t know if it applies all over England) the GP dose not have to fund them, all they have to do is refer. They cannot use no funding as an excuse to refuse an referral.
I hope that when you see the mental health team that they assess you and decide that they can refer you on to a Autism diagnoses service. It is going to be a long road and a fight, but keep going. You are intitiled to be assessed, go armed with all the information you can, write down as much as you can. If possible take somebody who can addvocate for you, that is if you have somebody, I didn’t have anybody. I wish you well.
i hope this reads ok, I’m not very good at writing things
Oh my word!
Thank you so very much for writing your experience in such an easy and understandable way.
It has given me much confidence that when I present myself to my GP I will be able to tell them why I should be given an opportunity to be assessed.
I will be alone as my siblings are no longer in my life.
My journey will be one just me.
I have always thought for me to get across how difficult day to day life is for me at age 55 would mean me putting on an act!
Yes an act, why because I always mask and rise to each specific situation as I have always done.
How I come across to them will seem as if I cope well, fully understand all there is to do with autism and as I have reached this age without aid or support then I can go away and continue to do so.
As I get older I can no longer keep up the constant battle to act. I can no longer take each day and get by, it tires me out mentally and emotionally.
I have created my own mess by always striving to be the best I can at everything I do.
I now have a job which comes with many responsibilities,I am expected to lead individuals and take care of all the safety aspects. Given I struggle to even understand the way they behave I find it increasingly difficult to keep up with the demands placed on me.
I am expected to be middle man. Working to lead and guide others based on information I receive from managers and clients above me.
it would be achievable but there are no fixed rules or set ways of doing this.
Each individual has to be handled and guided in a specific way. I have to constantly change who I am to interact,
In a single day I am having to be manager,worker,mate,boss,friendly,understanding,sure of myself,
I am left exhausted and confused,
Each day I dread the ever increasing interaction I may encounter.
Apologies for going so far off topic but felt an overwhelming need to get my point across as to how we come across when first presenting in front of any professional looking for a formal diagnosis,
The alternative to seeming able is,
Am I expected to turn up, start stimming,flap my hands about, sit silently avoiding eye contact and trying so hard to forget all the coping techniques I have spent a lifetime learning.
Thank you for your words, you are amazing and have shared valuable information giving many of us hope.
what you have written sounds just like me, it’s so true we have had to cope, because, for us who are older, it just wasn’t possible for us to be diagnosed when younger, because when we were growing up Autism was not on anybodies radar.
It wasn’t until I was working with special needs adults and children that I even came across Autism, this is in 80s, and then Autism was simply another form of mental handicapped, sorry that’s what we used back then! It was only associated with severe intellectual disability. We have come a long way in our understanding since then. But for us older ones, we have had to grow up as best we could.
However it is an ‘act’ everyday, I had to put on my ‘shop face’ as I call it, my first job from leaving school, before going back to college was working in a shop and I had to learn how to act and look after the customer. So I call my ‘act’ my shop face. It’s the ‘face’ that I show to the world. Trouble is it’s affective enough to fall people, most of the time. Until I melt down into a crying heap, or say something that is regarded blunt and rude. Or make some other social oops
Its very hard to let the real person show, so going to the GP and getting them to understand that, yes we may have grown up, reached our 50s but we haven’t thrived, we have just about survived, and it’s costs us dearly in terms of health and welfare.
Im no longer able to work, the stress of living with undiagnosed ASD, as well as having underlying physical health issues, has meant that my body physically and mentally collapsed and now I am very disabled.
I hope when you go to chat with your GP you get a helpful response, all I can say is write it down, make lists, whatever works for you. Keep fighting. You may be alone, as I am, but you are not alone in being the only one to make this long and hard journey in getting diagnosed, I don’t know you in person, but in the sense of walking a familiar road, I am with you. All the best.