adult diagnosis - woman in her late 40s

Hi :-)

Yes we do have a lot in common!  That Sport Direct guy was stupid, but you aren't wierd, you are special in a great way :-). Everyone has different problems in life and these are ours.  I have found it so freeing since my diagnosis because I understand myself so much better. I haven't gone round telling everyone, but I am not hiding things with my family and friends anymore, like if I want to swap seats because I don't like the way the sound is coming at me, now I just ask. Before I would have sat there, got a migraine and left early.  Now I don't even explain why I just ask someone to swap... the feeling that I have to explain things to people has been really hard to overcome, but it has been a major break through. It has really changed me and it turns out that not explaining things makes zero difference to the way that anyone treats me. I thought before that if I didn't go over why I wanted something then nobody would give it to me. But they do! A nice smile and a polite asking is all that is needed. Who knew! I really advise you to try it. Not with family though, I mean with random people. Like the other day  in a wellbeing drumming class I asked if I could change my sticks and I didn't go on about my life story to them about why I wanted new sticks like I would have done before lol. 

I am lucky in that because I have an identical twin sister,  we were always getting looked at even when standing still lol.  So I don't care who is looking at me and I don't get embarrassed at all.  I wish I could make everyone see that standing out doesn't have to be negative.  I am by no means confident in some areas, but people looking at you doesn't mean bad things.  I firmly believe that 95% of people have good hearts and would not want you to feel awful because of them. So I just smile and continue on my way. Assuming that people mean nice things has helped me when not being able to read faces too, because I might back off but I don't go away thinking that they hate me and feeling bad about myself.  

Awwww asking your daughter is a really positive thing in my eyes and will deepen your bond. Letting her help you will make her feel so good and the communication will help you to understand each other better.  I use to love it when I could help my Mum out because she never showed weakness. My sisters and I have spoken a few times about this and we think that it would have helped us know how to cope with life better if she had admitted some of her struggles to us when we were younger.

Well that's me waffled out hahaha.  I am so bad for writing long messages lol. I really enjoy reading the other women's messages so perhaps you and they won't mind :-) 

Hello Echo

Thank you so much for your detailed reply; I have found it so heartening as, like you say, there are plenty of successful autistic women who haven't been diagnosed or, like me, have never had autism suggested to them before!  I can really identify with a lot of what you say, although I haven't had an assessment yet and am still in the 'finding out' process.  My GP is going to try to refer me to the Lorna Wing centre but we don't know yet if they will agree to the funding.

Like you I also overshare and wear my heart on my sleeve and I can't lie to people.

I am good at small talk too and can be really friendly to people which means I make acquaintances easily but I don't have deep friendships.  I don't think I have trouble with eye contact but I do find social meet ups exhausting and try not to plan too much so that I have recovery time.  I find it difficult sometimes to understand what people are saying to me and either get the wrong end of the stick or have to ask them to repeat it.  In groups you can get away with it but one to one, I worry that people notice it and I'm aware that I might come across as not listening or dopey.  As a result I don't have any self-confidence which is why I compare myself to other people and always think they are doing better than me.

I don't repeat sentences but I do talk to myself, particularly when in the supermarket!  Once I caught someone looking at me and felt really embarrassed.

I know what you  mean about trying to judge people's emotions.  Sometimes I'll find myself thinking that I don't know whether someone likes me because one day they'll be friendly and the next day will seem cold.  I end up asking my daughter if she thinks they like me which I then feel ashamed of for sharing my doubts with her!

I wouldn't say that I have sensory problems in particular although I'm aware that smell is very important to me.  Once in Sports Direct I smelled one of the shoes the staff brought out for me to try on and then he made a comment to me along the lines of how weird you are and I felt really embarrassed afterwards.

Hello Catlover

I don't have any sense of direction either!  I also don't like driving much and I think my fear of motorway driving is partly linked to a fear of 'getting lost' in the sense of not getting in the right lane or being able to read the road signs at the same time as driving.

I like to be alone too and love animals.  I'm very happy just to be at home and 'potter'.  However, I also like to socialise to bring me out of myself but aren't good at planning social meet ups and don't like to have a lot as I get very tired.  I find conversations difficult as I don't always understand what people are saying to me or don't follow the conversation.

I also can't lie and tend to overshare, wearing my heart on my sleeve which at times in the past has made me vulnerable to unkind people.

Like you said about your experiences, there's more I could add but I don't want to go on too long.  I hope your assessment in December goes well.

Hi Guinea Pig Fan

I also love guinea pigs and I have 2 :-)

I was diagnosed a few months ago at 40.  When it was suggested to me 2 years ago (waiting list for the assessment was 18 months) I completely blew off the suggestion thinking that it was ridiculous as I am really sociable.  Over time waiting for the assessment I began to educate myself about autistic women and realised that actually I am.  Also, looking back at my childhood myself and my close family began to see that actually I did have traits all along, but none of knew anything about high functioning autism in females back then.

This is over simplfying things but I know that this is what you have asked, but some of the traits that I now recognise are these. 

I cannot lie and my instinct it to be blunt and black and white about things.  I have learnt over the years to 'fluffy' things up.

I repeatedly watch the same TV series  especially when stressed. I would do this as a child and I still do it now.  Before I got Netflix I watched the same film for an hour each night before going to bed for weeks at a time. I would like to watch other things, but I sometimes find other programmes (even food ones) overwhelming and these are comforting.  I just let people believe that I don't watch much TV when I say that I haven't seen things.

I repeat sentences in my head if I like how the person has said them. Or instructions.  If I did this out loud as a child then my twin sister would tell me off so I do it in my head. ... Nobody knows that I do this.

I am very sociable and I love being around people but I find it exhausting and need lots of alone time to recover.  I am very talkative and I've always known that I talk over people as I struggle to know when it's my turn. I have worked on this and I have to constantly remind myself to stay quiet and listen.  Other people don't realise this now as I have gotten much better at it.

I use to overshare.

I get really really anxious going to new places or doing new things even though I am sociable ???

I can make small talk really easily  and I have lots of acquaintances that I am friendly with, but I struggle to make close friends.  I have university friends around the country who I still talk to, but no-one close.  I struggle to maintain any close relationship as they get overwhelming.

I can tell if emotions are good or bad but not exactly what they are.  I am better with positive emotions, but I struggle to tell the difference in negative ones - anger, irrate, tired, bored. That can cause me to withdraw from some people as I cannot tell what they are thinking and it causes a lot of self doubt.  

I am really bothered when my routine changes.  My world doesn't end, but I get thrown off and sometimes this means that I am not at my best, whereas at other times it snowballs and everything goes wrong.  Which you may think that I am a control freak and I am organised in work but I am disorganised at home. It has taken me YEARS to be able to get myself organised.

Without realising it over the years I had come up with rules about how everything works and how myself and other people should respond in different circumstances. It was only when in more recent years I stopped working with children and worked with adults who did not always follow these rules that I had problems.  For example I would know that a nice person should do X but then someone would do Y and I would be really upset.  I didn't even know that I was doing it until a psychologist suggested that I had too many rules which I was really angry at her for saying so as I didn't even think that I had rules. Turns out that she was correct.

When questioned about when I was very young I couldn't believe it but apparently my twin sister and I wouldn't respond to people when they called us, played with other children but they joined us and we never went over to them. I also left friends crying and played next to them because I didn't know what to do with them.  By the age of 8 I had already learnt lots of social skills as this is when my memory starts and I know that I would never ignore people or do any of these things.  I would swear that they weren't describing me!

I have sensory problems with sound and textures of food and clothes.

I do look people in the eyes when I speak to them.  

Oh also I have ZERO interest in a specialist subject like autistic men do.  I have a poor memory so I couldn't be like that even if I tried lol.

I hope that helps.  It has helped me reading your other replies :-).  It is nice hearing from other autistic women who are successful in their lives.   I wonder what they will say for you :-).

* Sorry for writing so much.  It was therapeutic for me writing it all down so I kept going  :-).

My time-management is poor, too. Usually, I spread myself too thin. Also, I multitask.

Not yet, they have offered me a choice of a face to face assessment or 2-3 online sessions and I have asked for a face to face assessment, now waiting for more info, and a date! 

Have they told you whether you will have a full-day or half-day assessment?  Mine is going to be half a day.

Thank you Ultramarine.

Great, I hope your assessment goes well!

Since doing research for my son who has some autistic behaviours, I realised that I had some of the traits too. I have suffered with depression and anxiety, and after being bullied at work for a long time finally got to the stage where I could not pretend I was ok any more. I was on long term sick leave a s then left my job. After feeling a bit better, I asked my GP to refer me for an ASC assessment. I waited 9 months then had a screening apt locally. I was so anxious they would not offer me an assessment. I was told I was entitled to a 2nd opinion so I asked my GP to refer me to the Lorna Wing Centre. He obtained out of county funding, this was agreed in Feb 2020. It all went quiet, then I chased them up recently and found out I am at the top of the waiting list! Hopefully it will be worth the wait.

Since doing research for my son who has some autistic behaviours, I realised that I had some of the traits too. I have suffered with depression and anxiety, and after being bullied at work for a long time finally got to the stage where I could not pretend I was ok any more. I was on long term sick leave a s then left my job. After feeling a bit better, I asked my GP to refer me for an ASC assessment. I waited 9 months then had a screening apt locally. I was so anxious they would not offer me an assessment. I was told I was entitled to a 2nd opinion so I asked my GP to refer me to the Lorna Wing Centre. He obtained out of county funding, this was agreed in Feb 2020. It all went quiet, then I chased them up recently and found out I am at the top of the waiting list! Hopefully it will be worth the wait.

Emotion - We can but it can be processed or shown in a different way. Wow, training to be a counsellor I think that's great. You will have an understanding of people (ie those on the spectrum) that maybe some counsellors don't have. 

Hi Guinea Pig Fan,

I've sent you a direct message.  Hope this helps.

I went to my GP who agreed to refer me to the Maudsley Centre (my local centre) on the NHS, but at the time I was very nervous, having read lots of stories of women being misdiagnosed.  I decided I would prefer to go to the Lorna Wing Centre because I understood that it was the best place for diagnosing women. 

The Lorna Wing Centre sent me this information about getting NHS funding for an assessment:

“Please note that the Lorna Wing Centre does not hold a block NHS contract with your local Clinical Commission Group (CCG) and therefore we will not be one of the service options under Patient Choice. You will therefore need to discuss a referral to our service with your GP.

If your GP agrees to refer you to our service we would need a completed referral form from yourself and a referral letter from your GP which needs to state clearly that they support the referral and will apply for an Individual Funding Request (IFR) through your local CCG.   Your referral will then be reviewed by our clinical team and we will confirm acceptance of the referral to you and your GP, if it is appropriate for our service and provide the costings.  Your GP will then be required to apply for an Individual Funding Request (IFR) on your behalf through the CCG.  If funding is agreed by the CCG we will require confirmation in writing from them before we can proceed with providing an assessment for you.”

So I asked my GP if I might be able to get an individual funding request to go to the Lorna Wing Centre, but she said no, because I had already been offered a referral to the Maudsley Centre.  I’ve since heard that the Maudsley Centre is one of the best places, but I still decided to go privately to the LWC because I was afraid that the waiting list on the NHS might be years long. 

I think the waiting times on the NHS can vary, depending on where you are in the country.  I’ve heard of people waiting less than a year on the NHS.  I wonder if your GP can give you any clarity about how long you would have to wait?

PS - the waiting list at the Lorna Wing Centre is also quite long at the moment because of the effects of the pandemic.  I sent them my self-referral forms in July, and my assessment is currently expected to be some time between March and May next year.  So it looks like it will be an 8-10 month wait in total, unless there is another lockdown, which will delay it even more.  They don't usually have such a long waiting list, but every time there was a lockdown last year they had to close, which created a backlog of assessments.

I am in my thirties and was diagnosed this year. The first 'professional' I spoke to about this laughed at me, so definitely don't expect everyone in the medical profession to understand a slightly less 'typical' presentation of autism. But you know yourself better than anyone, and I don't think it's ever too late to try and learn more about yourself.

If you haven't already, I would definitely recommend reading Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx. I didn't identify with everything in this book, but I don't know if anyone ever does... 

I'm not sure where you are based, but I would also say that the Lorna Wing Centre are well recognised for their work in understanding that the presentation in women can be very different. 

Hello Guinea Pig Fan,

I realised a few days before my daughters assessment. I was wondering how we got there, and how I could have missed it when she was little. I kept thinking what a bad mum I was, when I used to keep telling her all was well, and she’s fine, as she was ‘just like me’ at that age. Then it clicked. This was 2019. I didn’t want to deal with it. I wanted her sorted out first and I forced it out of my mind. 
(After 3 meetings, they said she wasn’t autistic.)

During her first meeting, it was suggested by people assessing her that I put myself forward to the adult team.

Several months later I also broached the subject with a nurse practitioner, and she was of the opinion that I had two bright children ‘doing well’, I’d been married, and held down successful self employment; why did I need a label?

Fast forward to May 2021. I booked a consult for my daughter and I with a Psychologist. They were in agreement that assessment was worthwhile for both of us. She went first, and was just diagnosed with ASD, Dyspraxia and ADHD this month.

My first app will be mid December.

I don’t really know what my traits are. But these are some of the things I do know.

My biggest problem is with communication. Its the things that aren’t said I can’t pick up on a lot of the time. Maintaining a conversation is hard. Small talk is harder. I can however, talk about things that interest me or matter to me emotionally, which means then I’m likely to overshare before I realise it.

I’ve learned to give eye contact, but that means it’s what I’m thinking about when someone is talking to me. Also what gestures to do with my face, or how to position my head to look interested and like I’m listening.

I don’t like change. I like routine. I think in black and white.

I’m blunt. I can’t lie. I don’t like people much, but do like animals.

I’ve always struggled with my mental health, have had depression many times, and anxiety and social anxiety.

I don’t know how I feel most of the time, or how to describe it. I can’t articulate my words in person as well as I can in written form. 

I prefer being alone. I don’t have any friends. I have lost friends for no reason.

I have had meltdowns, and since I’ve learned about shutdowns, I can recognise I have them much more. I just stop talking and withdraw.

I am sensitive to light, and can hear everything in a coffee shop for example,  meaning I struggle to hear the person in front of me.

I have no sense of direction. This hinders me greatly. There’s so much I could list!

I’m afraid it was luck

That does help, Frances, thanks.  I've written a couple of messages already to Ultramarine and Catlover.  Were you able to request an assessor from your GP that is up to do with female presentation or was it luck that she was?  I'm 47.

Hello Catlover

Thank you for your reply.  I would love to ask you the same question as I asked Ultramarine about what you consider to be your autistic traits and which ones you feel you don't have.  I can definitely identify with what you both say about sometimes believing you could be autistic and then the next minute doubting it.  Also the more research you do the more you feel that you are finding traits in yourself to give yourself certainty.  What or who made you realize that you might be autistic in the first place?  How did you both go about getting the diagnosis?  I have already been through my GP, who has agreed to refer me, but I don't know where this will be and I want to be sure that the person who assesses me will be up to date with female presentation, as Frances said in her post.  I have asked the GP if he will refer me to the Lorna Wing Centre, as recommended by my psychotherapist, but I am still waiting to hear if this will be possible.  Also, should I wait for an NHS referral, which make take a year or more, or speed things up by going private?  So many things to consider.......

Hello Ultramine

Thanks for replying to my question; I would be really interested to know what you consider to be your autistic traits and which ones you feel you don't have.  I can definitely identify with what you say about sometimes believing you are probably autistic and then the next minute doubting it.  What or who made you realize that you might be autistic in the first place?  I had never considered it for myself until my psychotherapist mentioned it to me and since I have been researching it a whole new world has opened up for me.  On many levels I am hoping that I am autistic because it would give me an explanation for my difficulties.  Do you compare yourself to other people and always think you are less than them which gives you low self-esteem?

I look forward to hearing from you.