Had my autism assessment this morning

[CardoMondo]

Sorry not really AIBU but I had my autism assessment this morning. I started a thread on here about it a few days ago as I was nervous and my mum was being unsupportive. It dragged up a lot of dirt. Feeling a bit weird about it all. Anyone else been through it as an adult?

@CardoMondo

Sorry not really AIBU but I had my autism assessment this morning. I started a thread on here about it a few days ago as I was nervous and my mum was being unsupportive. It dragged up a lot of dirt. Feeling a bit weird about it all. Anyone else been through it as an adult?

Yes, I felt weird for a few days afterwards, and when it came up at work, and they were brilliant and helped me with reasonable adjustments.

Also you just need time to figure out what autism means for you. It can't be changed, we mask to fit in with the Neurotypical, and half of it is the relief of not having to "pretend" any more.

You also feel like this because it is a change and typically we don't like change. But, we do like a plan, or a process, so concentrate on being logical about helping yourself adjust to this news.

I thought it was rubbish there was no follow up "care" post-diagnosis, such as: now you've been diagnosed you might be feeling like ...

So, from what I found on my own:
National Autism Society - contact them, call their number if you want to talk to someone. There are courses available for support, you can get help through Access to Work that can fund the courses if your employer can't and also coaching to help you at work to figure out what Reasonable Adjustments work can do for you (they are legally responsible to help you).

You are covered ny the 2010 Disability Discrimination Act as a Protected Characteristic.

I told my husband in detail (he was like - well that's just you) and once work properly understood there was officially "something" they were great (before that they refused to accept it and my life was hell for about a year). I still haven't told my family - a lot of child hood history would just be trawled over and would not be a positive experience for any of us. But maybe your mum is adjusting too, maybe could feel a failure that she couldn't/didn't help you sooner, or doesn't associate you, as her daughter with autism.

Also to anyone else reading, the 2010 DDA covers you if you suspect you are disabled - not just autism) and disclose that to them, they are under obligation to assist you, they can't just ignore it/make you "prove it".

@SusieBugandMe

I don't know anyone who has been for an assessment and NOT been diagnosed

I have.

Oh just wanted to add, if you suspect you are autistic and feel you definitely want to know, but are intimidated by the process you are legally entitled to an assessnent - go through your GP.

@AdoraBell

Not me, BIL was diagnosed with ADD in his early 40’s. When DH told me it made perfect sense regarding DH’s behaviour and attitude. Apparently his psychiatrist said that his mother (late MIL) had ADD or autism. Step son was diagnosed with dyspraxia at age 19, and one our DC has issues that to me are clearly ADD because it’s exactly like MIL, BIL, DH but she does well academically and socially so I didn’t see the point of kind of labelling her while she was at school.

While I understand and am patient with people who have neurological issues, DH actually said “there’s not point talking to our GP, because what can they do at my age?”

That was the point that my patience with him stopped.

1. Re. DH - losing your patience is unsupportive. If he us ASD then change is difficult for him and going for a diagnosis is mental change.

1. DD - if she is, she may be masking and this is exhausting. If you think, "she is no different to other girls", look closer. Is she? Or is it an act? Does she come home exhausted, snappy, grumpy, because she's had to hold in her real self all day? This is why so many women do not get diagnosed until they are adults, and by then it might be a reactive diagnosis rather than a proactive one, like most boys get because they get diagnosed earlier.

You don't have to share diagnoses with anyone, the good it might do for your husband is that he is protected under the DDA 2010 at work and if your daughter is struggling with processing time for example this could help her in her exams with extra time given.

@LadyJaye

I was diagnosed eight years ago, when I was 33. The process took about 12 months and was pretty unpleasant at times, particularly as my mother was initially reluctant to participate.

However, I'm glad I did it and, with hindsight, so is my mother. It's worth remembering that autism - particularly autism in girls - wasn't well understood in the early 80s and my mother was very defensive.

Now that she understands that my 'quirks' are as a result of my neurodivergence, rather than her parenting, she has found a lot of peace with herself.

For anyone going for assessnent- you don't have to take your mother/father - they ask for someone who has known you as a child. If you could confide in a grandparent/aunt/uncle and this is easier this is OK too. I took no-one.

@PollyGray

I think I have the same or similar struggles but I have found ways to hide them. All the training I've done has just been an expression of whatever interests me at the time and I immerse myself into it to such a degree I don't attend to anything else.

I hope your diagnosis means you can have some support or adjustments at work or at the very least your Manager is someone who will support you.

Legally DDA 2010 your workplace must support you. Contact Access to Work for the costs to be met for adjustments to help you do your job, even if you are doing your job and performing well, you may be able to do it better/progress faster.

A lot of nurses here! I’m training to be a nurse and actually having my pre assessment phone call tomorrow. What can I expect?

Where did you all get a diagnosis? I would like to get an assessment for myself

Reading this thread I'm wondering if there is a possibility I have autism?! For a while I have thought something about me was different, but I put it down to social anxiety. But then I also think I dont feel emotions in the same way as others.

Then the other things on this thread, like developing obsessions and hating changes are so much like me as well. I wonder if I could have got this far in life having it without knowing?! When did you all first start to suspect? And what first made you think you might have it?

I suspect I am. A lot of my youth i felt different but I just took it as it was me, I was picked on as an adult for my social abilities (or lack thereof) and it was only when my DD displayed traits that I researched it, I realised a lot of said "traits" were me! I've been on a few courses over the years where parents of autistic children have stated their children did X, Y, Z and they didn't know why yet I sat there thinking i did those things because of the comfort, the sensory reaction etc. It has been an interesting journey.

Everytime I look at DD, I see myself as a child. Back in the 80s I don't believe it was something that doctors knew much about and as unfortunate as that is, I don't blame my parents for not noticing or anything. They were great parents and still are. But seeing it now, I'm not sure whether to go through my own formal diagnosis. Where would one start? What changes upon diagnosis for those who have had one as an adult?

wetsausageroll it’s kind of difficult to say because there are different approaches to assessment but generally they want to know about childhood (difficulties you faced, friendship issues), what you struggle with now in relation to friendships, work etc.

heartofstrings there’s a few options: GP can refer you via NHS - free but often a long wait plus the GP has to agree it warrants the referrals” (mine was skeptical because I mask so well and genuinely said “Well I don’t think you are but if you really want me to, I’ll refer you”. Would have loved to be a fly on the wall when she got the letter saying I was diagnosed). You can go private which is quicker but you have to pay, some people don’t take the private diagnosis as seriously. Or you can go via a charity where you give a financial contribution, sometimes the same issue with the diagnosis.

Bluemoooo I realised from reading a MN thread! Someone posted saying I think I’m autistic and when I read about the traits in women it was a “light bulb” moment. Why I have sensory issues, why I struggled with friendships, why I find work more difficult than most....I looked at the Tania Marshall definitions of ASD in women and ticked so many boxes. That’s why I asked for the assessment.

I started to suspect it when my son was diagnosed as an adult and I realised how similar we are. Once I started on the journey, so many things started to make sense. Now I know there's a reason for how I am, rather than just thinking I'm a bit shit at life.

@Bluemooo

Reading this thread I'm wondering if there is a possibility I have autism?! For a while I have thought something about me was different, but I put it down to social anxiety. But then I also think I dont feel emotions in the same way as others.

Then the other things on this thread, like developing obsessions and hating changes are so much like me as well. I wonder if I could have got this far in life having it without knowing?! When did you all first start to suspect? And what first made you think you might have it?

I have always felt like an alien. Even as a child, couldn’t understand why I was so different. I’d say something and everyone would laugh. I had no interest in the things the other kids were interested in and they found my interests weird. I have been called weird since as far back as I can remember. I used to get obsessions with things and with people. Used to watch the same movies on repeat every night (Grease and then Nightmare on Elm Street). Could never make friends. Always seem to say the wrong thing. I have odd emotions, I don’t get upset by things other people get upset by. I have little empathy. My sense of humour is very child like (toilet humour), I don’t tend to get jokes as I think about things too literally. I go from one obsession to the next. I live in baggy clothes/pyjamas as properly fitting clothes make me want to scream, I feel trapped and claustrophobic. I cut all the labels off so there is less to feel on my skin. Repetitive noises make me so angry, like pure rage I feel like smashing something if it doesn’t stop.

My son was diagnosed two years ago and all of a sudden, things started to make sense.

@NooneElseIsSingingMySong

wetsausageroll it’s kind of difficult to say because there are different approaches to assessment but generally they want to know about childhood (difficulties you faced, friendship issues), what you struggle with now in relation to friendships, work etc.

heartofstrings there’s a few options: GP can refer you via NHS - free but often a long wait plus the GP has to agree it warrants the referrals” (mine was skeptical because I mask so well and genuinely said “Well I don’t think you are but if you really want me to, I’ll refer you”. Would have loved to be a fly on the wall when she got the letter saying I was diagnosed). You can go private which is quicker but you have to pay, some people don’t take the private diagnosis as seriously. Or you can go via a charity where you give a financial contribution, sometimes the same issue with the diagnosis.

Bluemoooo I realised from reading a MN thread! Someone posted saying I think I’m autistic and when I read about the traits in women it was a “light bulb” moment. Why I have sensory issues, why I struggled with friendships, why I find work more difficult than most....I looked at the Tania Marshall definitions of ASD in women and ticked so many boxes. That’s why I asked for the assessment.

I’ve just looked up Tania Marshall ... wow. It’s like she literally wrote her report on me personally.

@SusieBugandMe

I don't know anyone who has been for an assessment and NOT been diagnosed

This is me! When I had my ADD assessment with a consultant psychiatrist he assessed me for multiple disorders (depression, anxiety, ocd, autism and adhd). I was diagnosed with ADD only.

Have they told you the result?

I had mine at 18, I found it hard to really look at myself deeply and realise that even things I didn't know weren't normal were autistic traits. I also found it super exhausting. It was a weight off my shoulders when he told me I was autistic though and its helped me be more confident in myself.

I was diagnosed mid forties and I'm 50 now. I was a nurse, but have had to quit following a breakdown and I just can't manage to talk to people anymore. It might be menopause related. I have ongoing depression.

I didn't have anybody to talk to post diagnosis and it has been extremely difficult viewing my life through the lens of autism. I've seen how it's affected me and felt very sad for all the times I've been misjudged and had problems because of it. I can't process the feelings, so it's resulted in serious depression. I really miss working and feeling useful and occupied.

All in all, it's better to know if you are autistic, but you have to be prepared for some grieving process for your past life. It's quite a journey.

@pleasefeedthecat

I was diagnosed mid forties and I'm 50 now. I was a nurse, but have had to quit following a breakdown and I just can't manage to talk to people anymore. It might be menopause related. I have ongoing depression.

I didn't have anybody to talk to post diagnosis and it has been extremely difficult viewing my life through the lens of autism. I've seen how it's affected me and felt very sad for all the times I've been misjudged and had problems because of it. I can't process the feelings, so it's resulted in serious depression. I really miss working and feeling useful and occupied.

All in all, it's better to know if you are autistic, but you have to be prepared for some grieving process for your past life. It's quite a journey.

I’m feeling like you describe since the assessment. I don’t even have the results yet. Since the assessment I just can’t bring myself to talk to anyone, I’ve quite honestly had enough of the world and everyone in it.

@CardoMondo

Give yourself time to process what's going on and, if you can, try to find someone to talk to after your diagnosis.

A few people have asked if anyone being diagnosed has ended up not having it. My son is one. He had so many traits as a young child (first eye contact was at 4.5 years old), lots of sensory issues, no pointing, no watching people, very black and white, got very stuck, obsessive on certain subjects, very very literal etc. He was formally assessed at 5 as being borderline. At 10, after bullying episodes, was informally assessed as having ASD and referred for a formal assessment with top nhs assessor for high functioning ASD. During the wait for the assessment it was suggested we check if his infant reflexes had not gone dormant and we then spent several months brushing points for 5-10mins a day to get these dormant. Within 3 months he had normal eye contact, by 4 months he was learning to banter, by 6 months he started pointing, by 8 months he was pointing to things outside of the car window.
When he started high school, because of his assessments and therapist advice, he was treated as having ASD (and they were wonderful).
But after all the brushing by the time his assessment came up - he was assessed as being Neuro typical. The specialist said it was rare they were able to tell parents their child was so Neuro typical. They said it was clear he used to have traits but he didn’t have them anymore and described him as ‘slow to warm up’.
If anyone is concerned their child is on the spectrum I would encourage you to also consider if their infant reflexes have not gone dormant. 5 mins of brushing each day for several months literally changed our lives.