To ask if anyone has been diagnosed with autism ad an adult.

[J1112]

Hi all, I am nearly 30 and always felt a little different. I assumed it was just me.. I apologise
for this not really being an aibu but hoping it will reach the right people to give my advice.

I have two children. Oldest is diagnosed with autism and youngest is suspected. It could be genetic on my bio fathers side but I don’t know him so don’t know (heard of others in his family with autism).

I am already diagnose with anxiety and ocd.

I will try and be brief. I’ve always struggled with empathy. I can really feel empathy but I cannot show it.

I have to plan what I’m going to say to people in advance an drive myself crazy. I struggle socially. I get real bad social anxiety. I know lots of people but never really made any close friendships.

I’m often socially awkward.

I don’t like change of routine. I get really anxious about it. I have a routine every day. Routine is important in my house with my children anyway.

Everything I do has to be planned in advance and I have to be super organised. I’m a planner.

I’m super sensitive to bright lights. Often have the blinds shut or sunglasses on even in the house. I’m fine outside in the light, just not inside when the sun is shining in. Hate it

I can be quite a sarcastic witty person myself to others but I am so literal when people talk to me. I don’t understand when people are being serious or not. Never get jokes etc.

I often talk other people. I don’t mean to. This is getting better.

I struggle to make eye contact and it makes me very uncomfortable.

I notice the smallest details ever and very observant. I can tiny things from years ago. My memory is very good which is similar to DS.

I can literally remember everyone I know birthdays and dates of other things. I don’t have to write dates down. I remember everything and anything.

I have some extreme fears that I won’t get into.

I struggle to relax but this is probably more anxiety related.

I also struggle with personal space. Mainly giving it to others. If i talk to people I don’t like getting close to them. Social distancing is easy for me BUT with my partner I always struggled with it. He tells me when we first met he felt I was very intrusive (thanks mate 🤣). We’ve been together 9 years now though.

Looking back to my childhood I did struggle with some things. I did okay at school academically but I always felt that I was an outsider and I just didn’t fit in as much as I tried. I preferred my own company most of the time.

Anyone else been through the same? I’ve felt for a long time that I could be on the spectrum. Maybe very high functioning as I sail through life okay if things go my way!

Sorry this is a bit long!

Yes I did in my mid 30s (also as a teen but was immediately dismissed as girl can't be autistic 🙄🤬) I was diagnosed at the same time as my ds. It made so much sense of my whole life and explained why I never realised that ds was different 🤣

Yes in my 30s. Quite a similar list to you.

Have you done the AQ test? It's online and will give you an idea. Also look at the ritvo test as it's more in depth and gives scores on 5 different categories. I score very highly on this one.

There is also an empathy quotient test which again, can give you an idea (mine was 12 out of 80).

Being diagnosed was such a relief for me as I finally understood why I struggled socially and why I always felt a bit 'off' and 'odd'.

Thank you both of you! @Cabinfever10 I get the girl thing. Dd is only 5 and the whole are so dismissive of girls with autism both diagnosed or undiagnosed. It’s a proving a lot harder to get the right support for Dd compared to DS.

@Fudgsicles I’ve just done all 3 and all results suggest that I could possibly be on the spectrum.

How are adults diagnosed? Is it a hard process? I’m concerned that a doctor will laugh me off as to the outside I look like a very functioning adult!

Bizarrely I find it easier talking to strangers than I do my own family or friends.

Yes, this year aged 45. You definitely sound like one of us! There are lots of Facebook groups for autistic women of you want to join one and post there, you'll gets lots of support.

I was actively pursuing a diagnosis until I had an argument with my husband one day and threatened to divorce him. Then he said he’d take my DC away from me because I was autistic so he’d get custody. So I immediately stopped pursuing a diagnosis in case it was used against me.

@zurala thank you. Do you think I’ll be okay joining groups? Sounds daft but I’m worried that I’ll be judged for self diagnosing myself! 😫 (obviously I haven’t diagnosed myself) but I do believe I could be somewhere on the spectrum. I was also a very late talker as a child - as were my dc.

@BluSpider that’s so hard. I don’t think it will be used against you 🥰 I’ve heard of plenty of autistic Mums that do a fabulous job!

I have a diagnosis. The threshold for referral will vary between areas, in mine you won't even get put on the waiting list if it's not having a significant impact on your day to day life. The waiting list can be years long.

If you feel you could benefit from a formal diagnosis then speak to your GP. They'll know what the referral process is.

I think there are more women with autism without a formal diagnosis, than that do have a diagnosis! I'm sure groups will be fine with you joining.

Thank you all. Most of my knowledge of asd is regarding children with my two! So interesting to read all this and will research more online!

I didn’t add to my op that I really
Struggle with affection. With partner and dc I am fine with it and can accept and show affection. With anyone else I cannot. If someone even from
My own family hug me I immediately go tense and want to get away.

I think my family think I’m heartless sometimes. I don’t think they really understand. They don’t understand DS’s autism and DD’s suspected let alone an adult.

I believe it could be genetic on my bio dads side but my mum and him split before I was born and I don’t know but I have half siblings who have dc with autism and I’ve heard there’s also more in the family too.

The waiting list can be years long
At present they aren’t even seeing cancer patients never mind anyone else. I need an ultrasound scan and have been told I’ll probably have to wait till at least Easter next year. It’s a very difficult time to get an adult autism diagnosis.

63, diagnosed in January. I use 'autistic' rather than any other term. Autism is a condition not a disorder. Adult autistics nearly always self-diagnose and many don't feel the need for a formal diagnosis.

Self diagnosis is totally fine! Not everyone is able to get a diagnosis.

@bluspider that’s really hard. All services are struggling. I’ve been waiting for a referral for an issue too. It’s not exactly urgent but troublesome. Been cancelled 3 times already. I live in an area where services are stretched anyway even before covid but yeah covid sucks doesn’t it! I’m not expecting to get an assessment or anything just yet. I’m going alright (ish) coping with life at the minute.

The waiting list for children here is 2 years plus so I can’t imagine what an adult assessment is like. Services are very over stretched.

@Hailtomyteeth my children have autism (well only one is formally diagnosed at present) and I always say they have autism or on the spectrum. I actually dislike the word ‘autistic’. I don’t know why it’s just a world that I don’t use often! I think it’s since a lady referred to my child and others as ‘autistics’ I really despise the world! Must be a relief to get a diagnosis though!

You sound like me. I went to the GP with a list of all the reasons I think I have it and a checklist you get off the internet that scores you for likelihood. She referred me to our local autistic centre. The test was a 2hr conversation, they make sure you're comfortable and close the blinds and then the lights off if you're light sensitive and they just talk to you about different things and experiences you've had an they put that all together and in their opinion if if all means you're autistic. Then they send you a report stating it.
I didn't get any additional support but having the diagnosis has helped me know how to manage myself.

Oh. And my wait from gp to diagnosis was no more than 6 months.

Hi, I am thinking about going for a diagnosis too. I'm 41. My DC is 9 and was diagnosed aged 5. I worry that my parenting would be questioned if I got a diagnosis though as he has challenging behaviour which does not respond to traditional parenting techniques (he has a PDA profile).

If you are going to be active within the autistic community, you might want to revise your opinion of the name we use for ourselves. If your children are autistics, they need to be proud to say so. But, of course, it is your choice. But also, why would anyone support your application for diagnosis if you can't even say the word comfortably? They will talk to you about that during the process. I am autistic. I have been autistic all my life. My entire family is autistic, every one of us. Autistic and proud.

@Nottherealslimshady thank you. I was expediting an assessment to go over weeks or months or even years (I know every area is different) like it is for children in my area.

@OttomanViper I can relate. DS has challenging behaviour too - he’s 9 nearly 10 diagnosed aged 4. He also has signs of pda but once he was diagnosed with asd we were signed off every professional (apart from speech and language) not long after diagnos as the services are so stretched here! He is so challenging I can totally sympathise!

Thanks @J1112 it is hard isn't it. No chance of getting PDA diagnosis in our area but I plan to look into private assessment soon as he will need it to get the right support in future. I still find it unbelievable that so many professionals don't know about PDA or refuse to accept it. Where does that leave our families who have the most complex and vulnerable children?

I think its alot harder with kids because they're developing and they cant actually explain. You can explain what you struggle with, how it makes you feel and all that and you can recognise things you do that are unusual.
I remember in mine he was asking about if I have any strong connections to scents and I said no I dont think so, never noticed anything. About 20 minutes later I started telling him about my plan to go to bruges to go to a certain soap shop be use one of the soaps the hap smelled of my nana and I wanted to buy it

Honestly, the assessment is draining, it was really daunting to face myself like that and found myself crying afterwards. But it's worth it. Knowledge is power.

Yes, also mid 30s, and it was both a huge relief and somewhat upsetting to find it out. It explains so much, but also makes me wonder what a life would have been like if I'd known all along, or better yet, wasn't autistic.

Having said that, I like my current life and have a lovely marriage and home. I also think I've dealt better with lockdown and pandemic life then most "normal" people, as living like this is pretty much my "normal" anyway!

Yes, diagnosed in my 20s.
I can definitely relate to you OP with the bad social anxiety, and planning what I’m about to say

I went private with Clinical Partners in London - really great experience with Dr I saw. I did some questionnaires before the assessment. My assessment appointment was roughly 2 hours, and then I got a diagnostic report through the post.
I was really anxious before hand, vividly remember feeling very shy in the waiting room but thankfully the Psychiatrist was just so lovely and accommodating. By the end of it had pretty much opened up to her about my whole life story

@Oxyiz absolutely. I felt more relaxed than ever during lockdown! Lockdown doesn’t change too much for us! I’m not working currently, my partner is and worked throughout but in a low risk to covid job.

Thank you all 🥰