Seeking perspective: Nervous about my June assessment after an NHS rejection

Hi everyone,

I'm looking for some support. I have a private autism assessment coming up soon after being rejected by the NHS (ANDS). They felt I didn't fit some of the more "classic" traits, particularly rigid routines, and many of my difficulties were attributed to anxiety based on my GP records.

This has left me with a lot of doubts about whether I'm actually autistic. While I do experience anxiety, I don't feel it fully explains my lifelong sensory issues, social difficulties, executive functioning struggles, and difficulties coping with change.

I'm also a woman, and I've wondered whether female presentations of autism were fully considered, as I've read that autism in women can sometimes present differently from traditional stereotypes.

A few questions:

• Has anyone been diagnosed without obvious rigid routines or stereotypical special interests?

• If you're a woman diagnosed later in life, were your traits ever mistaken for anxiety or something else?

• What should I expect during an adult autism assessment, and is there anything you wish you'd known beforehand?

Any advice or experiences would be greatly appreciated. Thank you.

Parents
  • Hello.

    What to expect: generally it is talking, with perhaps some simple tasks. There should be some questionaires beforehand. I think there is done variability in exactly how it is structured. Knowing it is hard to think of examples of things on the spot, I filled out a lengthy form beforehand which covered many areas (I wrote about 15-20 pages). I had examples of most things. So the discussions were some clarifying questions, some general background information about my life, so additional questions. I was burnt out, so I couldn't mask although I was trying hard not to, I was dysregulated, and traits were quite apparent.

    I have mentioned on here before they had decided from the initial discussion, so the process was making sure there was enough evidence. But in the initial discussion I had filled no forms or questionnaires, it was just a discussion about why I wanted to be assessed. There must have been something in my body language, communication and comments that face it away.

    My point being it is a combination of factors you probably can't easily see in yourself.

    Note that ASD is the bucket at the end you fall into if other things don't fit completely. Often autistic people have comorbidities, other conditions, such as anxiety, trauma, depression, etc. so they are looking for something more than this.

    There is no specific test, like a blood test, to prove autism. So it is somewhat subjective. But I think experienced people can probably tell. I also think there is more experience with women now, it is not as rare.

    I believe misdiagnosis amongst people who mask well is quite common. Both sexes can mask.

    You don't have to tick all the boxes. I don't obviously stim most of the tine as far as I know, for example. I am not clumsy at all, indeed quite the opposite. So it is ok to deviate on sober items or not gave them.

    Depression and burnout cab reduce interests and hobbies. Activities can be less obvious though, like being obsessive about work, or certain tv programs, or having set routines without really knowing why, like clothes having to be folded a certain way. 

    I didn't think I had much till I thought about it over a few weeks and found I had loads. They discounted a few, I just tried to capture all my thoughts.

    The main thing is to try to be yourself. Don't say what you think they want to hear, but say what is true. Things which seem inconsistent, contradictory or unrelated may show a pattern you are not aware of.

Reply
  • Hello.

    What to expect: generally it is talking, with perhaps some simple tasks. There should be some questionaires beforehand. I think there is done variability in exactly how it is structured. Knowing it is hard to think of examples of things on the spot, I filled out a lengthy form beforehand which covered many areas (I wrote about 15-20 pages). I had examples of most things. So the discussions were some clarifying questions, some general background information about my life, so additional questions. I was burnt out, so I couldn't mask although I was trying hard not to, I was dysregulated, and traits were quite apparent.

    I have mentioned on here before they had decided from the initial discussion, so the process was making sure there was enough evidence. But in the initial discussion I had filled no forms or questionnaires, it was just a discussion about why I wanted to be assessed. There must have been something in my body language, communication and comments that face it away.

    My point being it is a combination of factors you probably can't easily see in yourself.

    Note that ASD is the bucket at the end you fall into if other things don't fit completely. Often autistic people have comorbidities, other conditions, such as anxiety, trauma, depression, etc. so they are looking for something more than this.

    There is no specific test, like a blood test, to prove autism. So it is somewhat subjective. But I think experienced people can probably tell. I also think there is more experience with women now, it is not as rare.

    I believe misdiagnosis amongst people who mask well is quite common. Both sexes can mask.

    You don't have to tick all the boxes. I don't obviously stim most of the tine as far as I know, for example. I am not clumsy at all, indeed quite the opposite. So it is ok to deviate on sober items or not gave them.

    Depression and burnout cab reduce interests and hobbies. Activities can be less obvious though, like being obsessive about work, or certain tv programs, or having set routines without really knowing why, like clothes having to be folded a certain way. 

    I didn't think I had much till I thought about it over a few weeks and found I had loads. They discounted a few, I just tried to capture all my thoughts.

    The main thing is to try to be yourself. Don't say what you think they want to hear, but say what is true. Things which seem inconsistent, contradictory or unrelated may show a pattern you are not aware of.

Children
No Data