What helped you while waiting for an assessment?

She's put into words exactly how I feel.  I sent my application forms in to the Lorna Wing Centre recently and I thought I would feel more relaxed afterwards, but I still feel unsettled and less able to concentrate on work, which is really frustrating.  I'm just going to try and only put mental energy into constructive things, like reading about autism and learning about coping strategies, like Purple Ella suggests in the video.  I end up worrying a lot about whether or not I'm autistic, and I'm trying to stop this.

i watched her a lot when she had purple hair ! Shes really good. I really like her. She has done so much for the autistic community. 

Hi, I just wanted to share a link to a video by Purple Ella about waiting for an assessment.  I found it helpful, and I thought maybe anyone else waiting for an assessment might find it helpful too.

(137) What To Do Waiting For Autism Assessment| Purple Ella - YouTube

Thanks for your reply Out_of_step.  I felt just the same - I wanted to write about my autistic traits in as much detail as I could, because I express myself much better in writing, and in conversations I don't always have time to think of the best way to explain things.  And yes, I also worried that I wouldn't be believed.

It's so helpful to read about everyone else's experiences on here, it makes me realise that a lot of people have felt the same things.  

Hi Dara, I hope that your assessment comes along very soon.  I am doing the same as you, writing everything down in case I forget to say it, because in conversations I don't always have time to think.  I wish you all the best for the waiting period.  It sounds as though you are doing all the right things.

Yes, I totally agree!  The people on this forum are amazing and so supportive.  I have found it so helpful to write to others on here, and so many people describe things that I have experienced too.

My list was about 12 pages long. I could have written the same again. I probablt spent about 15 hours on it. (I think this was an example of hyper focus). I made this list because I didn't think I'd be believed and it helped me as a prompt during the developmental interview and also if there was anything I missed out during this interview. I also told them that unless asked specifically,  I sometimes don't give all the information.  So the writing was good because I'd had time to formulate ideas etc which I might have missed verbally in the moment. 

Also, it's a spectrum and everyone is individual it affects everyone in different ways. Sensory might not be much of an issue for you. Or there might be aspects of your life you consider normal but they actually aren't.  

Stimming wasn't in the criteria and didn't come up on my assessment, although they mentioned restricted behaviours. I don't think stimming is anything exclusive to autism.

I think joining this forum has helped reinforce the fact that I can really relate to other autistic people. This is particularly important if you struggle with the uncertainty of diagnosis waiting times.

Hi JustMe, 

Thanks for your reply.  It's a relief to know that it's not only me who's made an extremely long list.  I've just been thinking back over my life and writing down all the autistic traits I showed, social mistakes I made, people I fell out with and so on.

At the moment I am wondering if I'm not autistic because I don't consciously stim.  I fiddle with my hair a lot, but I think probably all women do that.  I do have lots of obsessive behaviours, but that might be OCD, not autism.

The other thing is sensory issues - I've read about many autistic people who have things that are really difficult to deal with, e.g. feeling pain when they hear particular sounds, or not being able to have their hair cut.  The only two things I can think of that might be sensory issues are 1.  I have a startle reflex that is more sensitive than most other people's, so I tend to 'jump' at a sudden loud noise more easily (like in a cinema, I tend to jump at noises during the film which don't seem to affect other people).  But that might just be anxiety, not autism.  2.  I sleep very lightly and wake up often during the night, and I need to wear ear plugs and an eye mask, use blackout curtain liners, and at this time of year, I have to tape black bin liners over the windows at night so that I don't wake up from the light.  

I don't know if these count as sensory issues or not.  I might just be anxious, have OCD, social anxiety and insomnia, but not autism.

I'm trying not to think about it too much, because I realise that it's my mind wanting certainty, which I can't have yet.  I'm trying to keep busy.

The AQ tests are very much just an indication, they can neither diagnosis or rule out autism. But if you do score above the cut off point, it just shows that you 'might' be autistic because you're experience some autistic traits. The actual assessment doesn't rely on AQ tests, though some do require questionnaires to be filled in. The problem with therapists is that they're very rarely familiar with autism, especially how it presents in females, so the chances of getting a therapist who could spot it, is low (not impossible. It has happened, just rarely). 

My list was long, even the 'short' version. The long version could be turned into a novel, I'm sure! Lol!  I used it to prompt me during interviews and when filling in forms, then I gave a copy to the assessment team to read at their leisure. I don't think any information is too much (besides, I think the very nature of the autistic mind leads one to making detailed lists! Lol!).

I am waiting for my assessment and feel exactly the same way. I keep practising talking about my traits in my head and writing everything down so I don't forget to say something. I keep swinging from being certain I'm autistic to thinking maybe I'm not because I find this or that easy, and then I start listing all the traits again to remind myself that they are there. The rest of the time I just distract myself with special interests, work and other things I have to do. But it will be a relief to get the assessment out of the way because in the meantime it is just there in the back of my mind all the time. 

Hi JJ,
I hope you find a type of therapy that works for you.  It's good that you have such a finely-tuned awareness now of what would work and what wouldn't be helpful.

Hi Untoward,

I'm sorry to hear that you had such unhelpful experiences with CBT.  I wish that more mental health professionals were aware of the symptoms of autism.  It seems that people have only started to understand it more relatively recently.  I hope that there will be more awareness and training about it as time goes on.

One of my CBT therapists recommended me the meditation app 'Headspace'.  I use it every day and meditation has been one of the things that has helped me the most.  That also focuses on breathing and awareness of sensations.  

Hi Dawn, 
That sounds so incredibly frustrating.  I really hope you have your assessment soon and maybe you will share on this forum what the outcome is - I'd be interested to know?  (Only if you would feel comfortable doing this)  I hope it goes well for you.

Hi JJ, those terms are interesting, and I have already experienced all of them!  Regarding 'Allowance', I find I've been more forgiving towards myself after interactions with people.  I often feel embarrassed and ashamed after talking to people, but now I try to give myself a bit more slack, and remind myself that this isn't one of my strengths.  I still feel the shame but it is getting a little easier.  

I agree with you that people can often try to repair the conversation, or they are understanding of the fact that I don't communicate well.  They ask me questions and help me get my meaning across eventually.  I hate drawing attention to myself, so I wish I could just communicate really easily, but I'm trying to be less hard on myself.

That's really interesting.

At the time (15 years ago) I thought CBT was the thing that was the cure to all my ills - and it definitely did help me operate in the NT world in the face face of constant and massive anxiety.
BUT
I took it completely on board and tried to use it 24/7 without realising what I was actually doing was trying cement the 'mask' on so hard that I could never take it off (without a huge amount of drugs and alcohol etc)... and this meant that I was inevitably headed toward a series of breakdowns that I just could not understand why they were happening. Surely I was doing all the right things??

Now, I look at all the types of therapies around (many of which I have engaged with before) and the first question is: 'is this reinforcing a mask that I cannot maintain?', 'how much damage will I do to myself if I try to implement this approach'?....

There seemed to be a whole new vocabulary attached that I simply had never thought about:
'Reframing': ruminating on past experiences through the novel lens of an Autistic mind
'Epiphanies': sudden understanding of why my behavior (X) never produced outcome (Y)
Acceptance: it doesn't matter how extremely hard I try, the one thing I can't NOT be is Autistic
Allowance: 'my brain doesn't work like that...' so just compensate, give myself the freedom to be unconventional / incomprehensible

What has been really nice is that people are generally so much kinder that I ever thought - just because I can't tell that a conversation (or situation) is de-railing doesn't mean that they are not (naturally) already in the process of of trying to repair it.

I have been to so many GPs for depression and anxiety, seen counsellors, had CBT and other therapies, and not one of them brought up autism.

But when I think about it, these people were not trained to recognise it, and since I'm always masking when interacting with people I was effectively hiding it from them.

I didn't know masking was a thing, I thought everyone was faking behaviour and pretending to be normal all the time. It's weird to think about, but from a young age I just thought everyone was doing the same thing as me, and they were just better at it. It never occurred to me that for them it comes naturally.

I suppose the person who would have been best placed to spot my autism would be the man who gave me CBT for anxiety. During his sessions he tried so hard to get me to come out of my shell, or get me to say things or drill down to my core beliefs and what I feel in situations, but I had such great difficulty answering him. All I could ever say was "good" and "bad". He would give me examples of emotions and things I should be feeling and I would say "I don't know" or just "yes" and "no" and he got quite annoyed with me because he seemed to think I was purposefully being evasive.

The CBT actually made me feel terrible because I was so bad at it and I didn't understand why I found it so difficult to give responses.

I think a trained professional might have noticed that it wasn't normal, but his area of expertise was only in CBT and going through various worksheets he had been taught to, and I was not very good at them. It was as frustrating for me as it was for him.

Funnily enough, the CBT did still help my anxiety, but it was mainly the focus on noticing the physical sensations in order to better understand how my own body reacts so that I don't let the feedback loop of anxiety/panic set in, and also the focusing on breathing and slowing it down gave me a lot of control over anxiety.

Yes, they are meant to be the world leaders so I'm sure we will be confident in whatever their assessment is. I think I'll get mine about September. They are a bit behind with the pandemic, like everyone. 

I was talking to a colleague yesterday whose partner has been waiting over a year on the NHS. He had a counsellor that spotted it straight away and referred. I can't get over the fact I spent so long under the care of the MH teams, giving them, I NOW realise as I action reply all those sessions with a clinical psychologist from memory, ALL of the descriptors and and so many clues, and they glossed over everything, still trying to treat me as though I was just having panic attacks. No matter how much I tried to explain that what they were saying just wasn't matching my experience, nothing seemed to be heard and I was just unco-operative and undeserving. Well, this DOES match my experience and all of the proposed solutions I'm reading about are the first things EVER suggested to me that make sense and look like they might work. 

It is a bit gobsmacking that they never spotted it, but sadly, I don't think general mental health professionals are all that clued up on ASD. That much is just down to training. What I can't forgive though is their general blame-the-patient attitude.

No, we can't afford to slip through the net again and I am sure the Lorna Wing Centre will find whatever is there to let us move forward, finally. The wait is a killer, though!

Hi Dawn,

I hope you have your assessment really soon.  Thanks a lot for recommending me the Lorna Wing Centre recently.  I have been in contact with them and they seem really humane and client-focused.  It helps to know that they are specialists in diagnosing adult women, because I have seen mental health professionals throughout my life and none has suggested to me that I might be autistic, so I am concerned that I might slip through the net again, but I feel confident that the Lorna Wing Centre would be able to give me an accurate diagnosis.

I'm sorry that it's difficult for you at the moment, I'm feeling a similar way.  It does help to know that I'm not alone.