Published on 12, July, 2020
I've been referred for an assessment by my GP and haven't told anyone else. I'm in my thirties and have been married for nearly a decade.
Last month I saw a post on social media about female autistic traits and surprisingly, I could relate to every one of them. I started researching and spoke to someone at NAS and took the AQ test they advised. I scored 37. It was like a slow dawning, where all my sensory quirks and social anxieties and list-making connected into something larger. Before that, I wouldn't have believed I was autistic. Last week I realised that some of my behaviours could be labelled as stimming - (I've always had these but previously thought were part of my overall 'weirdness').
I haven't told my husband. I think that if I said I might be autistic, he wouldn't believe me (I struggled to believe it at first). He's not unkind or cruel.
I'm worried about telling him, in case I am assessed and I don't get an autism diagnosis. Then, I'd have to accept that I am just weird and I'd feel embarrassed at exposing a part of me that I've worked my whole life to keep hidden.
I'm assuming they'll want to speak to him at the assessment, so I've got to tell him at some point.
Any advice on how to tell a partner or family member about a referral?
Whether or when you tell your husband or not is your decision. You know your husband far better than I do! But I will relate my experiences.
First, if you get a diagnosis it will show you are autistic. No big deal. To get a diagnosis you will have to show certain traits. Whether these affect you much in everyday life only you will know. There are many of us on here who do not think being autistic affects them much in everyday life.
For an NHS diagnosis you will have to go through several hoops, whatever the 'autism strategy' says. My GP refused to put me forward for an assessment, despite scoring a score of 48 in the AQ test. His opinion was that since I'd made it through sixty years it wasn't causing me a problem. How wrong he was! And this is the first hoop you will have to pass through. In many cases you will only be put forward to an NHS assessment if your GP thinks you have problems with your everyday life, and it is very difficult to put into words the difficulties you have if you are autistic....!
I spent my life 'masking' my autistic traits, or rather attempting to, with varying degrees of success. There were always times when I misunderstood the context of what someone was saying, or said something others thought 'inappropriate', or got bogged down in what I was doing, or become overwhelmed with sights, smells, actions, noises, and I just could not bear the sight or smell or taste of a lot of food. I suffered anxiety, depression and stress throughout my adult life. By hey, this did not really impact on my 'normal' life......!
Even if you were to be put forward for an NHS assessment, it could take two years or more... which is what I was told. And things came to a head with a change of employer through TUPE, when I suffered very severe anxiety and depression. I decided to go for a private assessment. And expensive though it was it was some of the best money I ever spent.
I could have been assessed and diagnosed within a month, but due to 'diary clashes' it was about six weeks after I made my enquiry to the psychologist. It was an easy and relaxing process, nothing to worry about. The psychologist said he could reduce his fee a little if I completed an extensive 'life story' prompted by his questions prior to the face to face assessment. He also said he would endeavour to find out, if I was not autistic, what condition I might have.
My diagnosis has opened doors, although at first my employer seemed reluctant to do anything, Access to Work were a great help to me. Problem with employers (especially mine) is that they don't recognise the difference between a conditon like autism which cannot be cured, and mental illnesses. My employer tended to think with a 'stern talking to' I could switch off my autism and become neurotypical. Problems I have had at work have only just been resolved after two years but now I feel very much better at work than I have done for a number of years.
Many people even now do not realise what autism is, and the effects it has. The number of times I get told 'we all feel like that', or get told to 'behave myself' is countless, and only serves NTs the purpose of some sort of 'empathy' which isn't helpful.
My wife still doesn't really understand by the way!