I'm undiagnosed, and have questions about diagnosis

Hi my welcome to this forum for autistic adults  and  non-autistic parents/carers/partners

Yes please!  I'm based in London.

Which part of the country are you in? I can recommend the place I went to for my adult female assessment on PM if you like.

As a tutor myself I have students who worry. They are usually the most conscientious ones and are afraid to get things wrong. (This is also a descrption of myself.) I don't know if they are on the spectrum or not but I try to help them whatever way. Don't feel you have to apologise for being a worrier. If you feel it'd help then maybe it's a good idea but I don't know you or your tutor! What are you studying?

That's a very good point.

Hi Out_of_step,

Thanks for your reply.  That's a helpful suggestion - to think about why I'm telling a particular person.  I think with my tutor, I feel I want to apologise and explain.  For example, I'm often anxious and worry a lot, and I just want to tell her that maybe this is why.  It feels like I want to apologise, even though I don't think she expects this of me.  But I haven't yet decided if I'm going to say anything until I am diagnosed.

I'm not going to tell my work manager, because I work from home (I have always done in this particular job, even since before the pandemic) and I have always managed to hold down a job and function reasonably well, so I don't think he needs to know.  As far as I understand from what I've read, I don't have disclose to any employers or potential employers.  I wouldn't want to harm my chances of getting work, I know it shouldn't be like that, but I wouldn't want to take the risk.

Hello Amy, thanks very much for sharing your story, it is helpful for me to read about your experiences.  I'm glad to hear that you got the answers you needed in the end.

I can relate to what you say about reading about ASD and not relating to all the symptoms.  For example, I don't think I have sensory issues, but I have noticed that if I hear a sudden loud noise, I tend to jump while others don't.  For example, in a cinema if there's a loud noise during the film, I will be the only one I can see who's jumped.  The other thing I find is that I need ear plugs and an eye mask to be able to sleep well.  I sleep lightly and until recently had a lot of trouble with insomnia.  I don't know if any of these experiences are typical of ASD.

I don't think I have meltdowns and shutdowns, but recently I went to a friend's exhibition and I was in a room with a few other people, and I started trying to say something without preparing it first in my mind.  I just dried up and had to stop.  I don't know if this is just anxiety, or a shutdown.  I'm really not an expert at all.

I am considering going private, and am looking for places which have a lot of experience in diagnosing women.  I have heard that the Lorna Wing centre is very good.

I often wonder if I just have social anxiety, but I can relate to a lot of autistic symptoms.  I talked to a friend recently whose son is autistic.  He said he was '100% sure' that I am autistic, because he's seen signs in me that he sees in his son.  I asked him what they were, and he said that when he talks to me, it's not like a normal back and forth conversation, it's 'a bit off'.  

Hello,

I am 29 and was diagnosed with asd about 3 weeks ago.

I did end up going to see a private clinical psychologist because unfortunately the autism service in my area, still holds a very male stereotypical view of autism and I was deemed to be able to function too highly to warrant a diagnosis.

I was referred by my GP to the calderde service about july 2020, and had my first assessment September 2020, second October and then recieved the answer in November.

I then sought out private clinical psychologist, (who I was informed had experience diagnosing females) around march 2021 and had my assessment June and was diagnosed with ASD but he also suspected ADHD, which I was at first surprised about but now it makes sense.

Anyways, even through all this process I was adamant that I was right that I was autistic, I still felt really nervous going private, because the first experience of assessment was not good, but going private was so much different and made me feel validated and listened too.

When I was doing my research I did have times were I worried that I was not going to be diagnosed because I was reading and watching about other peoples experiences of being autistic, some I related to and some I didn't.

Looking back on my recent assessment in June and reading the report with everything pulled together I think crikey some things I do I did not even realise they were because of being autistic.

For example, in my assessment the psychologist asked if I collected things. I immediately said "no" because reading from others experencies who may collect things like coins, stamps etc. My partner who was in the assessment then said "yes you do. You collect clothes" 

So I like secondhand clothes and reflecting on this now, I do have a lot, but clothes to me are a necessity and I wouldn't of put it down as a collection, until the psychologist asked percentage of clothes I wear and do I let my partner put them away, how would I feel if my partner got rid of some without me knowing. I replied I wear about 30% of my clothes, he doesnt put them away because he would not put them away properly and I would be really upset if he got rid of some.

It was helpful having my partner in during the assessment because he said/noticed indications of autism that I did not and believe me, I thought I was pretty clued up on it due to the constant researching that I do!

On my journey of self discovery, I told my manager that I identified with many traits although hadn't been diagnosed at the time. At the time of this conversation I was signed off work with anxiety and I felt it a good opportunity to mention it. 

One thing I will say from experience.  If you do decide to tell someone (either I am AS or I think I might be) you need to know WHY you are telling them. I've found for myself, its no good just telling people because they won't know what to do with the information. It needs to be "I'm AS/potentially AS this is how you can help me when I need help" or, "I'm AS / potentially AS and this is what I find difficult". 

Just out of interest, what were your Aspie test scores? I scored higher than "neurotypical" on the questionnaire where you have to read the faces and choose the emotion. 

Its interesting yo hear aboyt different exoerirnces because, although there are common themes, its different for every body. There are many things which I never was aware of until I started reading about AS.

You could also contact your Clinical Commissioning Group, ask to speak to the Commissioner for adult mental health and get the information direct. Then you’ll be in a position of knowledge and can inform the GP the process they are obliged to follow ;-)

Thank you ItsMyMind!  This is such a kind community.
Aonghas, I hope that you are able to get the help that you need soon.  Maybe you could try contacting the National Autistic Society, on this website?  There's a 'contact us' tab at the top of this page.  Sorry that I don't know more about this - I'm still finding my way myself!

Hi Out_of_step,

That's a very good point.  Thanks for mentioning it.

I'm still undecided whether or not to tell my tutor yet.  I wonder if I should wait until I have a diagnosis.  Even though I am anxious when I'm there, I don't think they can make any adjustments for me because I already work in the corner where I feel more comfortable.  If I tell my tutor 'I think I might be autistic', and then later it turns out that I'm not, I think I would feel awkward about that.  Even though it might be several months or longer until I know for sure. 

On the other hand, I wish I could just say 'I think I'm autistic and that would explain why I'm anxious so often.'  But I don't know if I can find the courage to say this until I have a definite diagnosis. 

Thanks a lot for your thoughts and support.

ItsMyMind,
Thanks for sharing this link - I appreciate it!
Do they have a similar application form for ASD assessments?  This one seems to be for ADHD.
Thanks for taking the time to let me know about this.

Hi ItsMyMind,
Thanks so much for letting me know!  

I didn't know what a CCG was, so I Googled it and think I roughly understand.  It's the group who fund NHS healthcare in a local area; is that right?

Fantastic to hear that you didn't need to wait for two years!  How were you able to be seen sooner?

Hi Mark,

Thanks for taking the time to write and suggest this.  I don't think it sounds like me, but hopefully when I go for an ASD assessment, if I don't have ASD then the assessors might be able to tell me if I have another condition instead.

Ultramarine have you by any chance heard of  borderline personality disorder? One of my fave comedians has it, & based off your description it could be asd or that condition.

Symptoms include emotional instability, feelings of worthlessness, insecurity, impulsivity, and impaired social relationships.(I copied & pasted this.

what you may or may not have

Hi Martin, thanks for letting me know about this.  It's good to hear that you were seen so quickly.  How did you find the psychiatrist?

Hello NAS73695, thanks very much for your message.  I'm glad to hear that you had a positive experience. 

I would like to find out more about the South London and Maudsley centre.  I will look it up on the internet.  When I spoke to my GP on the phone last week, she said a name that sounded like 'Maudsley', so I think she meant that I would be referred there (I'm based in London too).  I haven't yet asked her about being referred anywhere else, but I will do, unless the Maudsley is the best place.

Do you know if the Maudsley specialise in diagnosing adult women who are 'high functioning', at the lower end of the spectrum, or whatever the correct term is?  My fear is that if I am autistic, I could be misdiagnosed because my condition may not be obvious.

Following your diagnosis, are you going to seek any further help?  Did the consultant not give you any information on how to cope with ASD, or tell you where to go or where to look if you need more help?

thank you very much