Recent Posts

Pages: 1 ... 8 9 [10]
Research Topics / Looking for autistic participants :)
« Last post by rmoseley on August 28, 2020, 11:43:39 PM »

I am very grateful to the moderators for their generosity in allowing me to share my study here.

I am an autistic autism researcher and long-term self-harmer. As a scientist in the field of psychology, my area of research focus is around mental health, self-injury and suicidality in autistic adults. I have published two papers on this, which can be accessed on the publications part of my profile page: . There is such a heightened risk of suicide in the autistic community, and I am passionate about raising awareness and understanding on this topic, such that hopefully autistic people can be better supported.

I am currently conducting a study looking at the relationship between self-injury and suicidality in autistic adults. It is an online survey, which involves completing a number of questionnaires. It may take up to an hour (typically about 45 minutes), but some people complete it much faster. You can complete the survey over many days and take as many breaks as you need, without losing your place. As a thank you for your time you will receive a £10 Amazon voucher, which we can specify to the country where you live.

To take part, you just need to be above the age of 18, with a diagnosis of autism, Asperger Syndrome or PDD-NOS.

To read our Information Sheet, please follow the link below:

Once you’ve read it, you’ll have the opportunity to sign up for the study if you so wish. You will be asked to enter your email address (we won’t store it at this stage), and the study will then be emailed to you automatically. If once you've read the information sheet you do not want to take part, you can just shut it down - we won't take any details from you, from just clicking the link above. :)

If you have any questions about the study, please do not hesitate to contact me, Rachel Moseley, at Bournemouth University ([email protected]), or post questions here in this thread.

Thank you so much for your time in reading this advertisement. :)

Kind regards,

Survivor Room / Re: If there was a cure for autism...
« Last post by Gerard on August 27, 2020, 12:22:31 PM »
Survivor Room / Re: Telling an employer about self-harm?
« Last post by Lorien on August 27, 2020, 07:54:39 AM »
How are you doing?

I am open about most things with work but keep any acknowledgement of self harm to absolutely need to know people and only if it's really relevant at the time. I only began to do this when an injury meant I couldn't work for a couple of months. I think most large employers are pretty aware of difficulties people may have but less so with smaller companies - exposure I guess. As far as I know, your employer can't really make there be consequences to where or how you work due to a disclosure like that, unless you both think it would help you to not be at home alone so much.

I would be wary though of explaining the relationship between work and self harm because it might come across badly. Broad strokes are usually best - eg explaining it's more likely if you're very stressed etc.
Survivor Room / Re: Diagnosis process
« Last post by Lorien on August 27, 2020, 07:46:40 AM »
If you want to you could request history via your GP, but if I wanted to know specifically if a diagnosis was in place, I'd call the most recent Psychiatrist's Secretary and request just the most recent clinic letter. There is less chance of refusal, you don't get more information than you need and it won't take forever. Either that or ask your GP directly to check.

I never had an actual assessment for any personality disorder, but had various versions of EUPD or PDNOS recorded before my autism diagnosis when they realised that it was an incorrect diagnosis.despite the fact that I had a good 9 months having weekly appointments with a Psychiatrist at a Therapeutic Community for Personality Disorders.

I don't know if they are supposed to do an assessment as such or if they can use their judgement based on the criteria and a history. My Bipolar diagnosis was done this way - standard appointment discussing historic problems, then made more specific later when they saw patterns. I don't think everything has a full and structured assessment. In fact I'd be willing to bet that more things don't than do. If they have made a decision it will be recorded. But it may well say something like PDNOS, or traits of EUPD, or probable EUPD, depending on what they think. I don't see any problem with telling the GP/people that need to know that is what is written or a simple I don't know. That isn't self diagnosis, it's just passing on their wording.
Survivor Room / Re: Diagnosis process
« Last post by Turtle on August 25, 2020, 05:09:47 PM »
I've had a look at the criteria and it does fit. I think I'm just confused about the formal diagnosis part - no one has ever formally diagnosed. I had an assessment for BPD, and then moved. I was discharged under new services. I then ended up in hospital a bunch and then was being assessed to see what help they could offer, and when I was about to have my next appointment to see if they'd offer support Covid hit and all support was cancelled. On one recent hospital discharge letter it said 'probable accentuated EUPD traits', another just said EUPD, my new GP asked if I have a personality disorder. But I'm not formally diagnosed? I guess it doesn't matter, it just means I feel like I can't talk about it. I really hate the trend of self diagnosing?

I could ask my GP for a copy of medical records which I guess should have any clinic letters? Although there will be scarce few clinic letters because treatment hasn't been continuous, it's been all over the place. I've read all the hospital letters I've been sent.

I think the site for my GP surgery said you can request online access and see your medical records there.

Maybe none of this matters, I just feel weird about it all.
Survivor Room / Re: Diagnosis process
« Last post by Lorien on August 25, 2020, 04:56:22 AM »
The image of BPD is often bad with professionals but often it's because it challenges them and their skills. Ha e you had a look at the actual criteria to think about whether you think it fits?

Any Psychiatry appointment will be followed by a clinic letter sent to your GP. I used to be automatically sent them which I appreciated.When my Psychiatrist and diagnosis changed they stopped doing that. So I called and asked for a copy which was sent out without issue. There is a diagnosis box in a standard format here but other areas may be different. But it should tell you what diagnoses you do have and an outline of the conversation and 'presentation' - what they thought about you. Sometimes they are a tough read but you are entitled to read them, unless they think it will be harmful to you. Even then they should provide an explanation or redacted version.
Survivor Room / Re: Diagnosis process
« Last post by Turtle on August 24, 2020, 07:00:08 PM »
On the one hand it's so validating, because someone is saying, "Yes, you've really been struggling, even if it's not depression and there are some real highs". Because when I get those huge lows it's terrifying. But then I have a good day and I think everything's fine and I'm attention seeking or overdramatic. Or that I can go it alone and I'm amazing. Or that I've made it all up and I'm awful but no one should help me.

The GP doesn't want to refer to services regardless of diagnosis because the services are so rammed up, unless I'm still struggling in 2 weeks. So right now they're just tossing around a label without offering support. ::)

Plus I've read so much about BPD that basically says anyone with BPD is attention seeking and taking up space in services and manipulative etc etc etc etc.

I don't know if I'm making much sense. I'm just confused by it all and don't know what to think and it all feels pointless if they're not going to offer support.
Survivor Room / Re: Diagnosis process
« Last post by Tucan on August 24, 2020, 06:47:49 PM »
A diagnosis can help you to understand why things are the way they are. Also it can help create a pathway to treatment. So for the case of borderline personality disorder it can help direct you to therapy that is designed to help with some meds. It can be hard to accept a diagnosis especially at the beginning. How do you feel like about it all?
Survivor Room / Diagnosis process
« Last post by Turtle on August 24, 2020, 06:41:50 PM »
I'm so confused about diagnoses at the moment. I don't know how helpful I think diagnoses are anyway - when the professionals starting assessing me for/talking about BPD it was both helpful and not. Helpful because it made me feel marginally less crazy for some of my behaviours, but not because what does any of this matter?

But I'm confused about whether I am diagnosed. I'm always dipping in and out of systems because of moving around anyway. Then they started talking about formally diagnosing in March and then COVID hit, so any thoughts about long-term help were cancelled.

My new GP called and she asked about whether I'd been formally diagnosed - I said that I wasn't but something had been thrown around, at which point she asked if it was a personality disorder, so I said yes...  So there's clearly something on my record, but I don't know what. I know NICE guidelines say that for BPD you should be assessed for a psych for 6 months? I'd quite like to access my medical records at some point to see what they're saying about me. (I could access through work but could be fired so really holding back on that).

I know the NHS can be quite reluctant to diagnose, so I guess I'm asking - at what point are you diagnosed? And is it even useful/does it matter? It's just bothering me!
Survivor Room / Re: If there was a cure for autism...
« Last post by Gerard on August 20, 2020, 12:54:39 PM »
Just in case anyone has heard, there is a connection between ASD and eating disorders, mostly anorexia nervosa.

As with all these things, however, we don't know enough of why they're related.
Pages: 1 ... 8 9 [10]