I'm undiagnosed, and have questions about diagnosis

Hi ItsMyMind, 
Thanks for your reply.  Like you, I've also been reading about women who were diagnosed later in life, and a common thing that they say is that other people tell them that they don't look autistic, or they don't believe their diagnosis.  Obviously I don't yet know if I'm autistic, but this is something I've been encountering already.  I've only told my immediate family and two friends, and I'm not going to tell anyone else until I have a diagnosis.  Two of the people I've told don't think I'm autistic.  I think if I do get diagnosed, I will only tell a few people, because it's a bit upsetting when people think you're just looking for a label.  I'm trying to be a bit understanding and forgiving, and remind myself that these people probably just don't know much about autism so it's understandable that they wouldn't necessarily recognise it in people.

Apologies Ultramarine I missed your questions:

You said:

“what do you think it was that initially helped you realise that you might be autistic?” and Honestly, it’s a bit hazy. I think about 2010 I started talking a bit tongue in cheek about ‘my autism’ as a short cut to having to explain what I liked things in such detail. I had also started reflecting on why I’d ended up building databases and why I loved it so much. In the media I’d started to tune in to various articles and podcasts about women who were diagnosed late in life. Seeing the PDA in my daughter forced my hand: I couldn’t allow her to be diagnosed and stay in the Autism closet. Thank reason I wasn’t diagnosed earlier I think is because I was born in the 70s when Autism was considered a male condition: simple as that. 

Ultramarine said:

why do you think it was that you weren't diagnosed earlier in life?

no problem  thanks for the compliment

aidie said:

awesome reply

Why thank you. Coming from a pro like yourself that really is a compliment!

Hello Aonghas:-)

Can I suggest exploring Access to Work? https://www.gov.uk/access-to-work/apply

I was put off initially because the application form and eligibility questions confused me but my Occ Health team encouraged me to just apply. I was awarded a grant which covers me for 5 x 2hour coaching sessions to help me in the work place. My line manager also received an award as part of my application for disability awareness training specific to ASD.

I’ve hade one sessions so far but it’s been really helpful and eye opening. I’m exploring being more open about my diagnosis at work currently and the coaching is giving me strategies to help me with this and help to challenge people/explain to people about what I need from them in order for me to perform my best 

He was very friendly, aware that the assessment was anxiety-causing for me, and very thorough. However, 45 minutes into the assessment he said, "I am confident in giving you a diagnosis of ASC", then went on to discuss some comorbid conditions I have. However, the drug he prescribed for my mild depression (Sertraline) just triggered migraines in me - just my luck!

Hi there, 
Sorry to hear that you had this experience.  I wonder if it's possible to see a different GP?  I actually changed my GP practice once, at a time when I was trying to come off antidepressants and the GP I saw was quite unhelpful.  I looked up the patient ratings of local GP practices and found a better one where I got the help I needed to come off antidepressants.  I don't know if you might be able to find somewhere more helpful?

Hi Dawn and ItsMyMind,
I thought you might be interested in this: I contacted the Lorna Wing Centre and they said that their centre isn't one of the options under Patient Choice.  This is what they said:

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.

getting a autism assesment isn’t easy .I went to my GP and asked for a autism assesment  and I filled in all the forms with the help of my mum but they wrote back saying I don’t meet the criteria I just don’t understand it  I tick all the boxes for autism .good luck to you 

Hi Out_of_step,
Thanks for your reply.  I've read that social anxiety is connected a lot with thoughts (for example, worrying that you'll be judged) and I definitely have this, but on the other hand, even at times when I'm not feeling anxious or having anxious thoughts, I find it hard to respond naturally when someone talks to me.  I find myself really consciously thinking about how I should behave, and I can tell that I don't seem natural in conversation.  This makes me wonder if I am autistic, because I can't intuitively interact like other people can.

Thanks for the book recommendations.  I recently found a post on this forum with several titles that people had found useful, so I will also look at that again.  

Hi Amy,

Thanks so much for your reply, it is helpful to read because I can relate to a lot of what you are saying.  Like you, when I told my mum that I thought I was autistic, she said she didn't think that I was.  And there are many days when I feel 'normal' and life seems to be going well.  But I too have had several other problems that could be interconnected.  I've also had low self esteem for many years.  If I am diagnosed autistic, I hope it will help me to feel less at fault for my differences.

I agree with amy and if you go for assessment, you'll get an answer one way or another. To me, social anxiety can be improved with therapy by changing how you see your thoughts. But if you inherently find things difficult,  (whether other people see this or dont notice) no amount of therapy will "cure" this because you'll always have social deficits to some degree. My anxiety isn't as bad now because I know there are aspects which are "just me" that I can't really change. So I don't worry about it. However, I still find social situations challenging to a certain extent.

I don't relate to quite a bit of what ive read on autism but I was diagnosed. i can still relate to a lot. Cynthia kim and liane halliday-wiley are also good authors amongst the others I've mentioned in previous posts.  Maybe make a list or keep a diary of how you think you relate to the three areas (communication,  social interaction and restricted behaviours). Also if you decide to go for an assessment,  don't chicken out like I nearly did several times. Stick with it.

You're friend is right that there is still a lot of people that do not really know autism. Autism is one of the most complex diagnosis, as it is highly heterogeneous. I think if you think you may be autistic and would like a diagnosis to better understand yourself then go for it, despite whether some people do not think you are.

I would definitely advise going to someone who is a trusting professional, who has years of experience and knowledge around assessing and diagnosing autism in females.

Pre diagnosis when I told my mum I thought I was autistic she said she did not think I was. She did not know anything about autism, so I didn't let her opinion deter me from pursuing a diagnosis. Remember that you are the expert on you. I agree with your friend, to continue to do your research so that when you have your assessment you are really prepared. By the time I had my second assessment (when I got my diagnosis) I was so sure I was autistic and I had sessions with a psychotherapist who specializes in autism that helped so much, because she agreed that I was, and I definitely trusted her opinion. 

Social anxiety disorder is common  in autism. Years ago I thought that all of my challenges was because of social anxiety disorder and when I started to research it only some elements of my struggles could be explained by social anxiety, and I realized that depression and anxiety that I have experienced was not the root of all my problems, they were a by product of something else, which I know now is autism. I am a lot more kinder to myself now and I fully embrace being autistic.

I can understand feeling anxious because I felt exactly the same, at the start I thought "Am I? or Am I not?" I am because of this reason... but I am not because I'm not like this... 

You won't relate to every symptom, experience that you come across because like I said previously autism is highly heterogeneous. 

Hi Amy, thanks very much, that's kind of you.  
At the moment I'm wondering whether I might just have social anxiety, not autism.  I have confided in a person I know, and they don't think I'm autistic.  But another person I know whose son is autistic says he is 100% sure that I am, and he says most people don't know about autism so they wouldn't recognise the signs.  

I've been in contact with the Lorna Wing Centre.  I hope I can be assessed there, because they have a lot of experience diagnosing adult women.  They say the waiting list is up to 5-6 months at the moment, and it's the same waiting list for both NHS and private referrals, so I am going to see if my GP will refer me there.  So that means that probably I won't get a diagnosis until early next year.  My friend whose son is autistic says that I can be doing things in the meantime to help myself, e.g. reading about autism and finding out things I can do to help myself.  I find the uncertainty difficult, but I'm trying to limit the amount of time I spend thinking about it all, because I can't do anything about it once I've sent in the forms.

It is strange because when I read about autism, a lot of it I can't relate to, but a lot of it I can.  Apparently autism is different for everyone.   But it does make me feel very uncertain about whether or not I have it, and I'm trying not to be anxious about this.  I think it will help me to know for sure.

You're welcome! I hope you find the answers you are searching for. You've made the first steps which can be difficult to do. I am always happy to help and answer any questions, so you can message me anytime. Your journey will most likely bring a whole load of different emotions so I would say definitly be kind to yourself throughout the whole process :)

I just want to say a big thank you to everyone who has taken the time to reply to my post and has been so helpful in explaining the process of diagnosis and supporting me at this time.  I am a lot more informed now and have started the process of getting myself referred for an assessment.  I really appreciate everyone's comments, thank you.

Hi Out_of_step,

Thanks for offering, I appreciate it!  I'm investigating places in London now.

Hi Juniper,
Thanks for sharing about your journey, it's interesting and encouraging to read!

Thank you!!  I have had to work incredibly hard to get to where I'm at. But I do hope to share what I've learned along the way. I've been left to sort life myself a bit too much and expected to grow up too early. So, many things from a lack of parenting to being stuck in survival mode held me back for years. But I did have amazing grandparents.

Before I realised I was even experiencing more difficulty than most, it was this hyper-focus and social blindness which worked in my favour keeping me going, even though I felt a bit isolated. But it's better to be alone than in company which makes us feel lonely! From what I understand, many NTs would've packed it in long ago on my timeline. But I learned about tenacity and follow through. I learned helpful principles like step by step guides on how to be reliable and trust-worthy. How to invest in others and give others room to be their unique human selves. I also learned to create aesthetic around me - with what I had. And these things were of no small matter of consequence. But I do think learning to escape the noise of society add my own spiritual journey - this ability to retreat and self-care was what made it possible to grow as a human.

We all have a journey. If there's one thing I would've loved to know more of early on, it's to be mindful of the misidentifications! Society tends to mislabel young females as insecure for actually experiencing being unprotected and told their worth is only valid if Capitalism approves of them in particular ways most won't receive. That's not insecurity. That's a psychological nightmare. Also, many issues might be psychological, but I never rule out biology. We need proper nutrients and minerals to function well. A lack of vitamins from rich sources can also cause anxiety and insomnia. Though I've also experienced them as a consequence of a bad relationship. And not but a few days after the exit, sleep returned and the anxiety vanished. 

I'm at the other end of the country. So there's probably not much point. Unless you want me to anyway.