I think I have Asperger's

[WildOrchids67]

The title says it all, really. I've wondered about this for the last two or three years and the more I read, the more I feel I tick enough boxes. I've been doing some research about getting assessed, and I've found a lady who has lots of great recommendations on her website, so I sent her an email and she's sent me a questionnaire.

A lot of the questions are about my early babyhood, milestones etc, which of course I can't answer, so I would need to ask my mum, but I'm not sure she'd take me very seriously, I'm not sure that she really holds with autism, ADHD etc. My dad wouldn't know the answers to the questions. I don't have any older siblings and the extended family weren't local, so wouldn't really know either.

My other concern is that some of the answers might rule out any further assessment. As far as I know I hit milestones as normal, I was maybe a bit ahead in terms of reading and speaking though. There are other things though that would fit, such as me usually playing by myself and not really having many friends.

I think I'm just a bit worried that me developing normally (AFAIK) might end up with the specialist believing there's no further investigation to be done and that I'm just a bit weird.

Has anyone else gone through the assessment process as an adult and had the same concerns? What happened in the end?

Thanks

Bump

yeah, i got diagnosed a few years ago via the NHS. Feeling like theyll tell you youre imagining seems to be an almost universal experience.

meeting milestones is not unusual, nor is it unusual for parents to not have noticed massive issues in childhood, especially if there are other neurodiverse people in the family. Certain weirdnesses can seem quite normal in some families.

If you can list all the reasons you think you might be, then its worth discussing it.
In my experience, its a less stressful process as an adult and they do take you seriously. After all, its not like it gives you anything except understanding and answers. You dont get social kudos and you dont get money for it. They arent trying to trip you up to go AHA, NO YOURE JUST WEIRD AND USELESS

Hiya. I was diagnosed with ADHD a while ago, and also had no one who remembers me as a child. The psychiatrist spoke to my husband, who has known me since my early 20s, so do you have friends or a partner who's known you a long time.

Although it's best practice to get someone who can give details of your childhood etc. it's not essential, as otherwise people like us wouldn't be able to be diagnosed.

Re milestones, one of my children has HFA and hit pretty much all milestones dead on time. Taking your history is just one part of the picture.

Thanks both! Good to know I'm not the only one that's worried they might be worrying over nothing.

I don't live in my home town, so there's no one here who knew me as a child. I'll phone my mum later though and explain, I do have reasons for wanting assessed and hey, it's my money, all it'll cost her is a bit of time. I don't know if there are any other neurodiverse relatives, if there are, I don't know about them.

I think what I'm really after is answers as to why I'm "socially inept", a "pain in the ass" and a "weirdo" as one so called friend referred to me when she thought I couldn't hear her. She doesn't know I heard her, I don't know what to do with this knowledge yet.

Can I ask, assuming you're both female, did you always get on better with guys? I've always been like that, not many girls seem to like me that much for some reason but I get on great with guys, they're more fun!

No, I am far more comfortable in female company. But my ADHD manifests in being very chatty, which women find easier to cope with on the whole.

I did recently see an interview with a very successful business woman with autism (Charlotte Valeur, Chair of the IoD if anyone is interested) who said it had been a benefit to her as she 'acts more like a man' - maybe the sort of experience you've had?

Hmm, I wouldn't say I act like a man, I was definitely a bit of a tomboy though, playing football, climbing trees etc. I just prefer being around guys, I'm just somehow more relaxed and feel way more comfortable around them. I'd happily be the only female in a group of guys! I'm not especially chatty, though I do try to join in and ask questions, it doesn't really come naturally though. If I know the person really well it's easier. Alcohol helps too, but that would be frowned upon at work

I left getting assessed because it took so long for my brother to get a diagnosis and also because ultimately it doesn't do anything for me: I work as a writer so all under my own steam, we've an eye on the kids for any issues and I just know. I've only ever had small groups of really good friends, I get ridiculously stressed under pressure or in new circumstances, even to the point where calling someone on the phone is a big thing! I try to make friends by chatting crazily at new people and scaring them off, I get obsessive about hobbies, even down to tiny things like I hate brushing my teeth due to the sensation and I just know. When I broached it with my mum she was really upset, I would say because that would be two of her children with it and she must see a lot of it in herself too. So after soul searching I left it. And I'm happy. Work out which would make you happy and just see. And OP odd/strange/weird etc ... none of it matters as long as you enjoy life and are nice to people. But best of luck and hugs!

Thanks! I do want a diagnosis if that's what it is, because it would explain so much for me and for other people. If I do get a diagnosis then I would be open about it. I don't think my family would be upset or anything, it's more that my mum is quite set in her ways and I'm not sure how open minded she is about this sort of thing. My dad used to be a psychiatric nurse in a children's unit before he retired about 20 years ago, but I think the kids he worked with had behavioural issues, so he might not know much about it.

I am nice to people, but according to that "friend" I don't fit in with the group of people we were with, because I'm not all sweary and loud like she is. I'd quite happily not speak to her again, but she's quite tight with a couple of that group, who I like, so I guess I'll have to just tolerate her. At least I might have a reason for being awkward, she's just a bitch Probably not the nicest thing to say, but I've been stewing about it for a while and she'll never see this post!

There are huge mental health benefits to diagnosis as an adult. Individual people might be fine not to pursue one for their own circumstances but on a population level, undiagnosed neurodiversity is a big cause of depression and other mental health problems.

Well, I've spoken to my mum, she thinks there's nothing wrong with me and I'm wasting my money, but she has at least agreed to do the questionnaire, just the bits I can't answer about when I was a baby, I can do the bits about primary school myself. She did say she doesn't know a lot about it, plus I feel most of my issues became more apparent as I got older, so she wouldn't necessarily know, I guess I've done a lot of masking.

I think I'm going to put some more information on the questionnaire as well, just to try to back things up, as there's a lot I feel the questionnaire doesn't cover and I don't want to miss out on further assessment by missing anything out.

I don't think it matters if your mum thinks you're autistic or not, as long as she answers the questions truthfully e.g. she might believe you played alone because you were shy, but if she describes how you played then she's giving useful info. Also milestones aren't necessarily early or late, but can just add to the overall picture of your childhood.

I'd also check that the person who is assessing you is experienced in the assessment of women and how autism can present differently, masking, etc.

@jacketdrama She definitely is experienced, it's her specialty and she's been assessing women for 25 years, so she knows what she's talking about. I'll need to remember to ask about how I played with things, she knows i didn't get on with the other girls in my class, but she thought they were all little horrors anyway

A lot of the questions are about early childhood, but there's a space for additional comments so I'm going to write examples of things I've noticed about myself as I've got older. Surely the more information the better, right?

That's great that it's her speciality.

There's a very good book by Sara Hendrickx about autism in girls and women (think that might be the title or very similar). I found it really helpful when I was thinking about my own childhood and working out what kind of behaviour might have been autism-related.

Also if you kept any diaries as a child or still have school reports, sometimes there will be useful info, e.g. I kept a diary in secondary school and it's full of comments like "x said I'm weird and that I have a voice like a robot." Seems really obviouswhen I read it now, but I'd never heard of autism when I was growing up, neither had any of my family.

Questionnaire completed and sent off, and I'm having a telephone consultation with her on the 26th. I really hope I get some answers.

I don't have any childhood diaries or school reports, but I don't remember any of my reports saying that there was anything to be concerned about. Then again I don't think there was as much awareness 20 years ago as there is now.

I have a diagnosis without developmental history. Mum in care home. And dad dead. My friend who's known me for nearly 20 years was interviewed.

Isn't it a breach of patient confidentiality to request, or insist, a family member to give info? I have nobody to do this at all - why can't they take my word?

Well, I can't really answer questions about my interactions with people as a baby, so that's where my mum comes in. Breaching confidentiality is when medical information is discussed with someone else without the patient's consent, which isn't the case here. The specialist did acknowledge that not everyone has someone who would be able to answer those questions, and would still be able to carry out an assessment, but I thought it would be best to get answers to these questions, just to make sure she has everything she needs.

Update: I was right. Officially diagnosed with Asperger's this morning. I have a full assessment in August which will give me more information on how that conclusion has been reached (which I think will help with some of my family, who seem to think I'm NT). For now I'm just going to take some time to get used to it all. I'll tell my friends eventually. It's not a surprise to me, but I feel like I need a bit of time to sort of get used to saying it to myself, I have Asperger's.

Still feels odd! But it's good to know I'm not just weird!

I am pleased you got your diagnosis, OP. I am going to get one as I have realised that I have so many signs of female autism.

I can relate to what you said about your ‘friend’ too. I have also been treated badly by people I thought were friends and they’ve called me weird but I don’t want to drop them as I have so few friends as it is 😢.

Did you go NHS or private? I think I am going to do the private route but it’s so expensive.

I went private, didn't want to wait for NHS, and from what I've read it might have been difficult to get a referral anyway. It was £400 to discuss the questionnaire and see if she thought there was a diagnosis to be made. The full assessment will be another £800, but she won't offer that if she thinks you're NT. There was no pressure to go for the full assessment either.

Totally get you about not wanting to drop friends. I do know some people that I'm sure will be fine. I think part of the reason I want a full assessment is so I can say to people that I've seen a specialist and this is why I'm socially awkward. I'm not sure a self diagnosis would cut it for some people I know.

I'm confused, you said you are officially diagnosed but seem to have paid £400 to discuss a questionnaire with a full diagnosis available at a cost of another £800? Is that correct?

That's right. It's essentially an evaluation of the questionnaire which indicates whether you meet the criteria for diagnosis. She said she's comfortable to make the diagnosis based on the questionnaire plus some other things we discussed over the phone, and the full assessment will allow her to provide a full diagnostic report.

I’m interested in this thread as I’ve sometimes wondered if I am on the ASD spectrum. Could I ask a question? What do you actually gain from a diagnosis? I know I’m a bit weird and awkward. I don’t know if I’m weird and awkward because I have Aspergers (for example) or if I’m just weird and awkward for no specific reason. Are there any practical advantages to finding out, or is it just curiosity? Thanks.

For me, it was to find out if this was the reason why I'm socially awkward and don't make friends easily. I don't expect I'll need any support at work or anything, but everyone is different. I don't think I'm socially inept as such, I can usually get by, but I do find it a struggle to keep conversations going, hence the awkwardness.

Thanks WildOrchids.