Telling my husband

Hi Chiffchaff, I'm not a regular contributor here but may be able to reinforce what some others have said, though I'm male with a later-life diagnosis 5 years ago.  It takes a long time to get an NHS diagnosis and at the end of it the feeling may be "so what?".  I had problems at work more or less throughout my working life but didn't go for a diagnosis until after retiring, when I thought the effect of social stigma would be less.  Until fairly recently, autism wasn't as I understand it a "protected disability" at work while depression, stress etc could require adaptations from employers, at least in a unionised environment, so if I had mental health issues at work I was happy to accept my GP's diagnoses of workplace stress, depression etc.

You ask whether your husband will be involved - in my experience not, no-one asked my wife to be involved and my parents were both dead.  I have heard that some diagnostic techniques involve discussion with people who knew you as a child, but there aren't any around except my younger brother who lives some distance away.  I did consider getting a diagnosis to access support services restricted to those with diagnoses, to find that most of these, in financially-straitened times, were only available to "serious" cases eg people with learning disabilities, people who needed care assistants to bring them to support meetings etc.  What I did find useful was an informal daytime support group organised by NAS, of other over-40 adults, though I had to travel 30-40 miles to attend, fortunately with a good rail connection.  It was interesting to meet others on the autistic spectrum and be able to discuss this openly.  I'm sure I'd worked with some colleagues in IT, Finance, electronics etc who've been on the spectrum, but they either weren't aware or weren't willing to acknowledge this, whether they had diagnoses or not.

You mention mental health support more generally and I'm sorry to hear you've had suicidal attempts etc in the past.  I had suicidal thoughts when younger but never went through with it.  Getting married gave me too many responsibilities! Another take-away I've had from meeting others on the spectrum and reading a little (though not a lot) on the Internet is that common mental health support for "co-morbid" or "associated" conditions like depression, anxiety etc often involves Cognitive Behavioural Therapy, CBT, and there seem to be problems in applying CBT to autistic people though the techniques seem to work well enough on many neuro-typical, NT, people.  That hasn't helped me to deal with continuing depression but does console me a bit that previous attempts to employ CBT-related techniques haven't been particularly useful for me.

I also now recognise now, from meeting others on the spectrum, that I do have at least moderate continuing anxiety and that this is probably a life-long condition.  Before, I recognised periods of stress and depression but put my general unease beyond that, down to being really conscientious where now I see myself as being over-anxious, relative to the normal population.  I'm not quite sure what I'm going to do about that yet, but it's a form of learning.

A final comment is that I did find some help by using a life coach rather than a mental health therapist of some kind.  Chosing life coaches is a fraught business, though, with limited qualifications and standards, and I was fortunate in falling into contact with one coach, first because she was offering voluntary support to carers (I was involved in dementia care for a relative at the time) so we had time to get to know each other in a setting based around care for someone else.  Later, I found she also had an autistic teenage son though again with no learning disability, and that may have helped.  She concentrated on asking what I was wanting to do, and how she could help, then offered tailored advice on specific topics in fortnightly or monthly sessions.   More of a paid friend and adviser, and definitely not a therapist or counsellor, but I found it useful for a couple of years with various issues, and as a person on the spectrum, you'll not be surprised to hear I don't have many friends to ask for advice.

It sounds llke you are in a potentially fraught situation in working for your husband and in having had some mental health issues.  But I'd suggest trying to get on with life and supporting and caring for your daughter and husband, get a diagnosis when it finally turns up, maybe investigate what support is available in your area, and only then consider whether to disclose this to your husband.  I did tell my wife about my diagnosis eventually and she's been supportive, though I suspect she's still a bit baffled.   We've been married for well over 20 years and I think she just thought I was eccentric rather than autistic.  I like to think I've always been fairly attentive and materially supportive for her and our son.  People on the spectrum may get some benefits from our attention to detail and lack of distractions by external social activities!

Good luck and best wishes!

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!

I was diagnosed 6 months ago but am yet to tell any of my family (I'm unmarried, have both parents and brother) .However I have told a few friends and work colleagues. Still can't get my head around how to tell family though...we just don't seem to connect on any emotional level..

If you find waiting for an NHS assessment difficult it is worth looking into other options. I got assessed by NHS clinicians running a social enterprise outside their mainstream roles. Any profit is invested back into services for autistic people. 

The assessment I had was really high quality and went beyond what the clinicians say they are now able to offer on the NHS. It wasn't cheap but it's a life changing process - getting a diagnosis in 4 months instead of waiting 2 years to even start the process has made a huge difference to me. 

You may be luckier where you live and have a much shorter wait time - it is very much a post code lottery. 

Sensory issues can be a real barrier - I had to leave a university role I loved because I got moved into a large, noisy shared office where I could not hear well enough to use the phone. 

Agree about lack of work being a problem too - there's nothing worse than having to pretend to be busy! Time flies past if I am engrossed in what I am doing, which I usually am. 

Thanks for the book recommendation. I'll look at that. 

Unfortunately our local library has had funding cut recently and is mainly run by volunteers. I did use to work in a book shop, which was nice, but there was a coffee shop attached and the constant smell was giving me headaches. Also we had to 'pretend to be busy' if there were no customers, which I found extremely stressful and resulted in me un-alphabetising and then re-alphabetising shelves of books. I'd rather just do useful jobs. 

I don't NEED to but I want to. 

I suppose if I stop doing this job, we'd have to pay someone else to do the work I currently do, so I'd lose that income. 

I would like to have a second income though, as it would help with financial anxiety. 

I don't know how long the waiting list is here. I'm waiting for the initial letter at the moment so I don't know what the process is. I understand this can vary in different areas. If there is an initial meeting, that would be helpful to me as I can ask questions about the process. 

I'm not sure that my husband will be negative. Incredulous, maybe. He's not the type of person to read/research ideas and prefers just 'getting on with it'. So it would be good to explain female traits to him when I speak to him. 

If the waiting list is long, I might not tell him until nearer the time. There is no rush. 

Your autism assessment report may well contain specific recommendations about the type of work and working environment that would play to your strengths.

My GP has encouraged me to see the Disability Employment Adviser at the local Job Centre to discuss a possible change of career. There are sometimes free courses available or schemes to help you become self employed.

I read a really good book called Odd Girl Out by Laura James who was diagnosed autistic late in life. She recommends waiting six months after diagnosis before making any major changes in your life.  

Library work can be quite autism friendly if you get the right branch and colleagues - such a shame so many are being closed down. Tutoring children individually might be something to explore for the future - you've clearly got a gift for this!  

Do you need to work? Can you afford to spend your time doing volunteering so you can set your own hours and commitment levels? Remove ALL stress from your life.

Thanks. I'll have a look at STEM ambassador jobs. I've often said to my husband that if I could get paid for listening to children read (and purely that), I'd apply straight away! 

My daughter is in the scouts at the moment and I've thought about volunteering but it's just too much on top of everything else that's going on for me at the moment. My husband goes abroard for business several times a month (which probably contributes to the fact we are still together!) so I'm often trying to keep up with daily life. 

I used to volunteer in a school literacy program too - nice & gentle, helping the kids read their books - it was only one hour per week as part of my company's good neighbbour volunteering team.

I wouldn't want to be in that environment too long - normal kids undisciplined, are too chaotic and noisy!

Have you thought about being a STEM ambassador? You go along to schools and engage them in a science experiment where they are given a brief, then they design the experiment and the build it and test it and then write it up - it's in connection with their teacher so you're just facilitating - it's great fun.

Similar is an assistant scout leader - lots of involvment, good structure & rules but you're helping / facilitating rather than taking responsibility - again great fun too.

Finding something that you can enjoy that earns money can be tricky.

Hi there I am 58, female, married and got diagnosed with ASD just over 3 weeks ago.  

I am trying to remember how I first broached the subject of getting assessed with my husband. I think it was after I did the AQ and EQ questionnaires and my scores strongly suggested autism. I told him how different autism looks in women and how much I fitted the profiles of other autistic women I was reading about. 

By the time I told my husband I was sure that I wanted to be assessed. That was important because his first instinct was that it would not be a good thing for me to be labelled. I talked him round a bit but he was still feeling quite negative at the meeting when I got told I was autistic. He said to the psychologist that he supposed the autism diagnosis was a good thing for me, but it still made him feel anxious. 

Sometimes there is an initial meeting to determine if a full autism assessment is appropriate. That was the case for me and I only told my parents, siblings and adult children once the full assessment was underway. I read somewhere that if an adult self refers for autism assessment they are almost always diagnosed, whereas if someone else encourages the person to get assessed they are a little less likely to meet the criteria. As the assessment went on I got more confident that I would be diagnosed. 

I did not want to tell one of my manager's at work until I was absolutely sure I was autistic. In fact I still haven't told her. This is because she was really dismissive when I mentioned to her that I thought I might be autistic a few months ago. She was also very hostile about making any accommodations for my hearing loss and Dupuytren's Disease, accusing me of using my disability to avoid tasks I don't like. I found this really upsetting as I am incredibly conscientious and hard working (much more so than my colleagues). I am dreading bringing autism into the equation, but I will have support from my Union rep and Access to Work. 

It is very early days for me and things are up and down as I make sense of my life and plan for the future. I have never once regretted getting diagnosed - I am relieved to know the struggles I endured over so many years weren't due to weakness or weirdness at all! 

I used to work as a teaching assistant in a secondary SEN school (with children who had varying delays, some were autistic and many were also non-verbal). It was such a hard job and I needed "recovery time" in the evenings but I loved it. 

School rules, teacher code of conduct, curriculum, timetables, and a lot of one-on-one teaching... I knew what I had to do and what was expected. And the children didn't hold me to such a high standard as adults do. I didn't make faux pas (or if I did, The children didn't notice). I'm thinking about returning (maybe part-time). I volunteer at my daughter's school one morning a week to listen to children read (an interest that I cannot get enough of) and it's wonderful - one-on-one in a quiet space where I listen and ask questions (from a list of prompts) and I get inside knowledge about common frequency words and reading schemes.

I understand that a teaching assistant job wouldn't be like my reading mornings. The classroom is a lot more chaotic! 

You sound just like me!

Be prepared that diagnosis may take a long time - maybe 18 months - and support afterwards is minimal and very much a post-code lottery.

All of the things you mention are all about chaos - things you cannot control and 'put to bed'.

Working with 'normal people' (NTs) is hard work .They simply do not feel the same levels of stress as we do in an imprecise world. They don't even notice it because the world is built by them, for them. Sloppiness and errors and incompetence are their natural modes of operation.

Lots of normal companies have difficulties implementing assistance for anyone other than NTs - they forget their promises but, because we believe they are supposed to helping us, we dare not keep pointing out their failures in case we are seen as liabilities. Things get worse until you meltdown & leave.

This is why lots of Aspies end up in engineering - actively making their world less chaotic. Engineers also don't want fluffy e-mails - just the meat.

Working for your husband might be your best sanctuary job where, with proper adjustments to help you, you will be most accepted. Either that, become an aerospace engineer :o)

There's also often a disconnect where Aspies accidentally end up in jobs that place massive demands on their ability to cope.

Maybe you need to think about your strengths and your weaknesses (things that take too much planning & energy and cause too much stress) and try to fugure out where your place in the world is.

I'm not sure. Perhaps in terms of the mental health support I'm offered? Previously I've had suicide attempts and been on and off antidepressants and talking therapies which haven't made a lot of difference. There are local groups but they are only for diagnosed adults. 

It would also help with reasonable adjustments at work -  having precise instructions, preparation time. And might give me confidence to work somewhere else, where my husband isn't my boss and doesn't make various adjustments due to his kindness and our relationship. 

I also take a lot of unofficial 'sick days' where I'm not actually ill but just recovering from a big meeting, or even a conversation (or the preparation for a conversation where I've been up until 4am rehearsing what I'm going to say and the various responses). I'm not sure if having a diagnosis would help with that, specifically. 

I'd actually feel less 'faulty' with the diagnosis, as I've spent my whole life working pretty hard to be normal but never reaching it. 

I'll accept whatever the assessors say.

I have had difficulties. I left university after a year and there have been some jobs that I couldn't stay at either.

I always watch TV with subtitles (since a child). There's nothing wrong with my hearing but I find it difficult to understand anything other than a string of individual words without the subtitles. My husband accepts this now but I have problems when we are not at home. 

I have problems at work where I'm described as being blunt. It's become a regular joke. I'm told I don't follow the rules of social niceties and now I often ask colleagues to check my emails and suggest "fluffy bits" so that they are not too direct. I'd like to look at working somewhere else as I don't enjoy all of my job but I'm not sure I'd be accepted elsewhere (I currently work for my husband). 

I also have some of my clothes hand-made, out of specific material and to the same patterns. Not something I tend to tell people. 

My husband and I do argue. He cannot understand why I need to prepare before I make a phonecall, (and won't answer if it rings unexpectedly), why I refuse to park on a yellow line (and will panic to tears if he does), why I cannot cope with arrangements or timings changing, why I like to wash things a certain way or follow certain lists. 

I don't have close friends. 

I'm so tired of pretending to fit in. It's exhausting. 

What difference will a diagnosis mean to you? You will be exactly the same person except for a single phrase labelling you.

If you've been married for all that time, then he's supportive of your quirks so it shouldn't really make any difference.

There could be a self-image problem if you consider a possible diagnosis as labelling you as 'faulty'. This can be a big problem, often leading to depression.

If you're self-aware enough to be self-diagnosing, then you can measure yourself and your needs and try to put things in place that reduce your stress and make your world fit better around yourself.

If you can make the world fit you, then there's nothing keep hidden.

From a friends and family perspective, those who matter won't care and those who care don't matter.

How much is he aware of any difficulties you have?  Do you have difficulties or is everything fine but you just perceive yourself as being a bit weird?  There's nothing wrong with being bit weird or not being a "sheeple".  One of the criteria for a diagnosis of ASD is that it has to cause you a "clinically significant" amount of difficulty in your life.

I'm fairly certain that people can have ASD but if they happen to be in the right environment it doesn't cause them a problem, so technically they don't have ASD.