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"Autism diagnostic assessment referral"

About: Intellectual Developmental Disabilities /Learning Disability Services - Community / Neurodevelopmental Specialist Service

(as a service user),

I was denied a referral as the information that I provided in the small questionnaire was not sufficient for them to think I had autism. The questions heavily focussed on childhood experiences, of which I cannot remember many as I had a difficult childhood and was an abuse victim. I felt that the questionnaire seemed to only cater to outdated and male-centric views of autism, with a focus on social interactions only. I have so many symptoms and yet because I could not regurgitate every little difficulty or interaction that would point to autism in this reductive set of questions, I was denied the chance to be evaluated properly by an actual human being speaking to me and getting to know my day to day struggles.

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Responses

Response from Autism Spectrum Disorder Nurse Consultant, Specialist Services Directorate, nottinghamshire healthcare NHS trust 2 days ago
Submitted on 04/09/2025 at 14:44
Published on Care Opinion at 14:44


Many thanks for taking the time to provide this feedback. We are sorry that you are dissatisfied with our response to your referral.

Autism is a lifelong neurodevelopmental condition it is important for us to gather information about childhood experiences. We acknowledge that sometimes people experience adverse experiences in childhood and this can impact on memory. We do use the standard autism screening questionniares and are aware of the limitations of these, and consequently request information in different ways. We are sorry you felt the questionnaire was small and felt limited in the information you were able to provide on our referral form. We invite referrers to provide the referral form in its electronic Word document format so that the boxes are expandable. We also accept additional information alongside our referral form that may be relevant. We currently receive over 450 referrals per month and are not resourced to meet everyone in person at the referral stage, and therefore consider referrals based on the information provided. We would suggest that you speak to your referrer about a further referral if you feel there is more information you are able to provide to support your referral. Once received we will happily look at this again.

Update posted by neptunepy67 (a service user)

Thank you for your detailed (and quick) response. Unfortunately, I tried to re-refer after the initial response, but this was denied. It was difficult to expand upon the questionnaire as my GP telephoned me to get the extra information while I was out shopping and in public, so I couldn't recall all of my difficulties/experiences off the top of my head, and I do not even know what my GP submitted as supporting information. Additionally, I could not get a word copy of the questionnaire to work as I do not have a Microsoft subscription.

I appreciate that many services are under strain, however, the letter I received was so blunt and dismissive. I think there needs to be better thought given to how communications are written, especially as it sounds like many people who may be on the spectrum will be dismissed due to an oversubscribed service.

I was told that my experience sounds more like social anxiety and adverse early experiences; I'm not sure how sensitivity to light, sound, temperature, and touch, repetitive behaviours, scripting conversations in my head repeatedly, audio processing difficulties, overwhelming emotions and meltdown, late/slow development as a child, clumsiness, difficulty with identity, taking things literally, strong sense of justice, difficulties with change, fall under these. I can appreciate that my other symptoms such as difficulty with eye contact, paralysing difficulty with making decisions, need for control might, but again, it just feels like I have been dismissed because I couldn't make the information fit the boxes/regurgitate all of this and more at a moments notice, and because I don't necessarily present with the male version of autism. I note that even my therapist stated that the system for autism diagnosis is very flawed.

I'm just really disheartened with how I was dismissed from a service that I thought would benefit me, without so much as a telephone consultation.

Response from Autism Spectrum Disorder Nurse Consultant, Specialist Services Directorate, nottinghamshire healthcare NHS trust yesterday
Submitted on 05/09/2025 at 14:48
Published on Care Opinion at 14:48


We can only suggest that if you remain dissatisfied that you contact our PALS service who will liaise with NeSS on your behalf for a further look at your referral and documentation received.

PALS and Complaints Department Mental Health and Community Health Services

Tel: 0115 993 4542

PALS and Complaints Department

Nottinghamshire Healthcare NHS Foundation Trust

Moorgreen House

Highbury Hospital

Highbury Vale

Nottingham NG6 9DR

PALSandComplaints@nottshc.nhs.uk


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