Anyone here been for an autism diagnosis as an adult. I am NC from family.

[ASimpleLampoon]

I was not sure where to put this but as I read the relationships board regularly thought this would be a good place.

I am five years NC with my parents and sibling although I am in touch with some cousins.

I have been for my first assessment for an autism diagnosis this week and have my next one next week. The second part of the assessment has to be a form to be filled in my a family member that has known you since you were young, who comes along to the appointment.

There is no one I can ask due to NC so my husband is filling in the form and coming with me.

This is bringing up a lot of feelings of sadness for me - that there is no one from my early life who cares about me enough to have stayed in touch with me, or to seek me out on social media. Some family members didn't bother with me for years and suddenly appeared after NC to try to shame me into speaking to my abusive parents again.

My son is autistic and he has been diagnosed early, and is in a good educational setting with his needs being met both at school and home. He knows that he is loved and accepted for who he is, at least at home and school and the small group of close friends I have and their children. It is my similarity with my son that has led to me seeking a diagnosis.

Seeing how happy my children are (I also have an NT daughter) makes me very proud of what DH and I have achieved with no support but I am very sad for myself .

I am also dreading that after such a long wait they may tell me I do not meet the diagnostic criteria. This is in spite of the fact that I am very sure that I am, and DH agrees.

I feel I have taken such a long time to find out who I am, and I do not want to lose myself again.

Has anyone been through similar and can offer some words of advice/support?

Can anyone help? Is there another board that would be a more suitable place to post, perhaps?

Hi Op, I was formerly diagnosed in April. If it isn't appropriate for a family member to be involved then the Autism Service that is assessing you should make allowances for that. I chose not to involve my family as they are abusive and it was fine. It as sad to have to do it that way I as I'd quite like a supportive, loving family, but I haven't and that is that.

I know what you mean about being terrified of being told you don't have an ASC. I'd put so much into the notion that I was on the spectrum that to be told otherwise would have been soul destroying.

Hang in there, it'll be over soon 💐

Thanks so much for your reply. It's good to know I'm not alone, although sorry that you too do not have a supportive family.

Did you find the assessment quite strange? They gave me a picture book with no text and just a visual story and asked me to tell the story based on the pictures, a puzzle to make a pattern with, and then a number of objects I had to choose and make up a story about. I know this is different to what children do in assessments but I though t it was quite childish, and I am not happy at having someone else speak for me in the second assessment. I know some people need more support than others but it feels quite infanilising and I've had quite enough of that in my life.

What made you think you were autistic, and has your diagnosis been useful for you?

I was diagnosed in October. I took my husband and not anyone from my family because they would not have helped - at all!
I think the general feeling is that if you think you are autistic, you probably are. You could ask for this post to be moved to Mns with special needs. It’s not a busy board but possibly more appropriate and you won’t get any unpleasant replies, sometimes on the main boards you will. X

I’ve done lots of reading on the subject. I’ve read stories of lots of people with no family members that have been diagnosed. Just explain you don’t have anyone to fill in the form. If you have school reports ask if they could help or write down your own childhood memories that fit with the criteria. Hope it all goes well for you.

A school report is a good thought, if it's from the old style of no-holds-barred reporting. I found one of mine during a clearout -- it says 'Academically more than capable, but my worry is her absolute lack of social contact.' (I was 6 or 7 at the time.)

I went private for my assessment because of this and the waiting times.

I have a clinical opinion which was later accepted by the team in the NHS.

I had a friend who I had known since I was 10, plus I had school reports and in addition a good friend I had known from 18yrs and a professional that had supported my son (also Autistic) supplied evidence. So even though I didn’t have family I still had support ❤️

Sounds like they are doing an ADOS test on you (I remember it from my son diagnosis). I thought that wasn’t so sensitive on adult women?

Oh yes, I took all of my school reports with me. They were very useful. I've known for years I was autistic after reading an article in a Sunday supplement about women and girls on the spectrum. Something just clicked and it all made sense. Having the diagnosis has been very validating. It proves I was on the right track all along and can continue as I am and it's all good.

I had an ADHD diagnosis as an adult and it was suggested I'm likely autistic. There is a SN board and a thread for autistic or neurodiverse adults.

Thanks for the replies everyone!

@oddgirlout do you mean the general feeling in the autistic community or medical? I know some support groups for autistic adult women who accept self diagnosed members due to gatekeeping and gender bias in the system. I really would like the validation though.

@Imoverthinkingit Unfortunately I do not have my school reports. My mother has them although I do remember what was in them as she cried every time I got a school report in my early years and never let me forget what was in them. It was such a source of shame for her. She never got over it - even though I was good academically in high school.

@unicorn

Hi,

I mean that it is unlikely that you will be found to be not autistic if you’ve gotten as far as being assessed. I know that some groups are happy with self diagnosis but I was the same - I needed to know for certain. It has helped me hugely knowing about myself, even in ways that I didn’t expect such as academically.

X

ooops lost half my message!

@unicornfeathers yes it was an ados test. Were you initially refused an autism diagnosis, then went private, or was the private the second opinion.

If I don't get a diagnosis by the NHS, do you think that I could get a second opinion via private assessment. The ados tests do seem better for male children... I have done a lot of reading around women and girls on the spectrum and it seems so much harder for us to get a diagnosis as we do tend to present differently, although I think that is down to social expectation and what we have to do in order to survive rather than nature. That is, behaving autistically will get us bullying and abuse, so we learn to adapt but internalise the anxiety at having to do so.

I am likely to have some kind of answer on Monday. It is horrible to be in limbo and I am thinking maybe it was better to stay in limbo than risk the heartbreak of being denied who/what I am :(

Thanks to everyone who answered if I missed anyone out!

@AsimpleLampoon

I enquired about the waiting times on the NHS and was told 18months - 2 years so I went private. I was lucky to be working at the time so could afford it.

After my diagnosis (it was a clinical opinion as it didn’t include evidence of my early development) I approach the NHS team for support. They readily accepted my private opinion and reconfirmed it after doing some work with me.

Have you got a sense from them as to their thoughts or more likely come to realisation your self as to your own neurology? I went for assessment to rule it out predominantly but the process led me to understand that I was autistic and it was undeniable. I then worried I wouldn’t meet the criteria but I think I was worrying about nothing as I was the only person who was surprised I was diagnosed 😂

I hope Monday brings you answers

ASimpleLampoon my DD2 (11) had her ADOS in December and she had a similar test to you. There are 5 modules for ADOS and the one they used for her was for children with fluent speech, but the tasks sound identical. If it's any consolation, DD2 thought it was a bit babyish, too, and she's only 11!

The test is quite illuminating, though. I received DD2's diagnostic report through yesterday and it was very detailed. For instance, with the story book with no words, the speech and language therapist picked up that although DD2 didn't use echolalia, she did use stereotypical language, and she used the word "ambush" 3 times when they were discussing the story, which is unusual. She also used phrases like "somewhat invincible", "regains life", "he's defying gravity" and "actual person".

The report looks at tone, gestures, turn taking in conversation, emotion, a huge range of stuff that goes well beyond the tasks that you did. It's quite amazing what they could see in the session.

Also, just to say that DD2 has been fobbed off referred to as a polite, shy girl for 7 years now. She was polite and shy in her appointment. She still demonstrated enough traits to meet the diagnostic criteria in both her ADOS and her 3DI.

It can be a confusing process because on the one hand there is the immense relief that your life suddenly begins to make sense within the context of your diagnosis and how you have behaved and been treated throughout your life, almost like a honeymoon period where you think, yes this is the answer.
But then often comes a sad or angry period where you realise so much could have been different in your life if only you had been diagnosed and given support sooner.

As you say, women with autism present so differently to boys and learn to "mask" their symptoms at a young age and unfortunately part of the process can be the struggle to get diagnosed when both the majority of services are aimed towards male diagnosis and also when you have "masked" your whole life you don't know when you are doing it not. If you do not get the diagnosis you expect, do not be disheartened, it can happen, it doesnt have to be the end and like any health diagnosis you can go private or seek a second opinion.

As Seline says, because of increasing awareness there is an area of mumsnet specially for women who are seeking a diagnosis/dealing with the challenges of being autistic/adhd with some long running threads as well , have added a link so you can have a look,

www.mumsnet.com/Talk/mumsnetters_with_sn

Have a listen also to some of Tony Attwoods autism talks, very good speaker and informative,

Hello,I have two dc with autism diagnosed.2 who don't like to mix ,but no diagnosis.they are adults.
I'm trying to pluck up the courage to go to the gp myself..so your braver than me ..I've no family...my dad chose to go nc when I was a teenager as I wouldn't do what he wanted.my mum has her own daemons..so I've no one to aśk what I was like as a child.

@unicornfeathers I was referred in February by my GP seen by psychologist in May referred to the autism service and was offered two appointments in December, which I postponed as my parents are taking me to court for unsupervised contact with my children (they already have suprevised - not court ordered). It clashed with a hearing and it seemed too much to cope with at once. So I think for me it has come very quickly. How much does a private diagnosis cost? I may start saving. When they asked me what it would mean to me to get a diagnosis I burst into tears and said that I feel that it is who I am and there has to be a reason for my difficulties I refuse to believe I am useless like everyone seemed to think I was as a child.

@lougle oh that sounds like the kind of thing I would have said at 11. I was like a little old woman at times!

Thanks for the links @straycatblue. I will check them out.

@veganforlife Best of luck to you with two autistic dc it sounds very likely! Sorry about the cruel way you've been treated, it seems to be a common theme among autistic women. I do hope you get the courage to go for it. Stay in touch!

My problem is I'm not sure if it's autism or bpd..they can be quite similar..my dh has hfa,so the kids could get autism from him.if I could figure it out for myself I would feel happeier going to gp.ive had suicide attempts ,eating disorders for 30 yrs.you name an anti depressant and I've tried it.

They asked DD2 what she thought would help her, and she said "to spend time with more children like me, children with disabilities." You can't put words like that in a child's mouth... It was so authentic and her, it was so profound, that the psychologist just said "That's a very good answer, thank you, DD2."

Oh, another thing DD2 said was that she felt "all alone in the world, like it is just me and the world".

@Lougle yes that's right, feeling like everyone else has a manual on how the world works, but you didn't get a copy!

Thanks to everyone for commenting on this. I now have a confirmed diagnosis, which I am very happy about. I am still waiting for the full report, which no doubt will be an interesting read x

I'm glad you got the diagnosis, it sounds like a big relief for you

Sorry to change the subject but I was wondering how the court hearing went? I can imagine that your abusive parents trying to get unsupervised contact with your children must have been so incredibly stressful

You may well know about these already but the Stately Homes thread and the "Toxic Parents" book might be helpful to you.

OP - it IS a relief, isn't it? I got my diagnosis on Thursday and already it feels life changing. Just waiting for my report too.
All the very best to you.