Adult diagnosis for women

Hi everyone,

I'm new here, so apologies if I'm posting in the wrong place!

I'm looking for some advice really. My older sister (who is in her 30s) has always been suspected as having autism, albeit mild.

From an outsider point of view, she functions just like any other 30-something would; she's just moved into a rented flat by herself (for the first time - previously it's always been shared accommodation she's lived in), she has some friendships (one close one with a woman around her age who works with people with learning difficulties) and she has a full-time job. So, on the surface, she is exactly as you'd expect her to be. However, once you get to know her you start to notice that she has the maturity level of someone around 18-20 years old (we still get the occasional "It's not fair" tantrums when she doesn't get what she wants). She's quite a fussy eater. She's very set in her ways and new ideas take a long time for her to take on. She struggles socially and often upsets the friends around her without realising it. And she struggles to keep full-time jobs for long - usually because she's "not performing at the same level as those around her".

As a child, she was a late reader (7), late talker (3, I believe), and generally very difficult behaviourally. Lot's of extreme defiance and routine was a must. My parents took very little interest in fighting for any sort of diagnosis for her to help try to make her life any easier, they got brushed off by a GP or two and they never pushed for any further help with it all. It's worth noting at this point that our childhoods were volatile, aggressive and, on more than one occasion, very violent so there are additional behavioural issues that will be sitting on top of the suspected autism too. 

Recently she has been going through what we dub as a "good phase". She's made a move to showing more mature behaviours, such as renting a flat by herself, and she hasn't suffered from any social mishaps. However, she moved jobs 6 months ago - which she handled very well given her aversion to change! - and it's all starting to unravel around her a little. It's a cycle which we have been through before - many, many times. Every single full-time job she has had, she has been put on disciplinary for underperformance. Her ability to last in a job is highly dependent on how much her workplace will tolerate. The main problem is that they are not allowing reasonable adjustments because she hasn't got a diagnosis of autism. She was, approx. 16 years ago, diagnosed with dyspraxia but it is only in the last two job roles that she has started to disclose this (as a direct result of taught behaviour from my parents who refused to acknowledge any of her issues - "if we ignore it, it might go away") but her lack of social awareness is really highlighting that she doesn't know when a workplace is taking advantage of her and are putting blame on her when they aren't providing relevant support. 

I feel as though, while she can simmer along reasonably, she is really struggling to live a steady life. This pattern with work, in particular, occurs every 18 months or so, meaning she never really settles before it's all up in the air again. It scares her. It all feels incredibly turbulent for her and I think a diagnosis would help, but I have no idea 1. where we would go to do that, 2. how I can try to take the stigma away from it all for her so that she feels ok pursuing the support, or 3. how to get any semblance of support or encouragement from my father (the mother has estranged herself) for her. 

Has anyone got any words of advice at all?  

  • All I can say is that I got my diagnosis at the age of 37 and, for the first time in my life, I feel able to be me.

  • Sorry I've been meaning to reply but I'm really exhausted and stressed at the moment.

    I was diagnosed aged 30.

    I am female.

    I now understand myself so much better.

    The professionals working with me understand me so much better.

    My parents understand my so much better.

    My expectations of myself and what my life "should" be like are much more realistic. I'm not faulty or failing, I'm just fighting a different daily battle and that's okay. 

    As for stigma... I just don't tell anyone... It really is that simple for me and everyone still treats me the same.

    I'd recommend an assessment to find out as it can really help to understand yourself, I definitely cope better now I understand. Though it's important to understand the assessment process is likely to be long and possibly difficult at times. That said, I have no regrets, I'm glad I found the strength to complete the assessment.

  • Hi NAS62475,

    It sounds like you would benefit from looking at the adult diagnosis page here on the NAS site - https://www.autism.org.uk/about/diagnosis/adults.aspx - which has information on the benefits of getting a diagnosis, how to go about doing so through your GP, what happens on the day of the assessment and so on.

    Hope this is of some help to you in starting the diagnosis process with your sister.

    Best wishes,

    Ross - mod