Question for adult diagnosees

I suspect it will simply be noted on your file now, as the psychologist gave you the diagnosis verbally so why would you you receive anything? I know I did not receive anything, but did notice with a wry smile on my face that it was noted on my medical records.

I had my assessment and diagnosis of AS on Friday - I went private (although I did consult my doctor) as the NHS waiting time in my area is apparently 18 months. Assessment seems to be a contracted out service here. I got given a "summary" letter to take away with me which is the kind of thing you can show an employer. It's actually generic rather than specific to me, but is scarily accurate! My psychologist said 3-4 weeks for the draft report to be sent to me, and I can then comment on that before the full report gets sent to me and my GP.

Quick update, I have just received my report in the post, 3 weeks after diagnosis.  I hope you have had some news by now and that you are accessing follow-up appointments.  

Rose said:

It is basically acknowledgement that you shouldn't expect things to happen overnight. And yes it is good to push for the help and support you deserve and need but don't be expecting miracles is what I say. There are people on the streets there are old and vulnerable people with no access to health care services. And all I see on this website is whining and people expecting to get benefits overnight expecting everything basically.

I don’t think you’ve looked around this forum enough then if that is all you see. For example, I see lots of people making the best of what they have, being determined in life despite constant trauma from it, people continuing to work in environments that are very difficult for them, people being very thoughtful towards others and taking the time to offer advice, people who have been so patient as to wait decades for help with their health problems, people that would do everything for what is right no matter what it would do to them personally, people who are a bit lost with a new diagnosis and seeking advice for comfort etc.

I personally see very little of what you describe. There will however always be some people, neurotypical and autistic alike, who expect everything handed to them with no effort on their part. But I would never judge people to be this way on an Internet forum such as this, because you ultimately only see a snippet of what people are willing to share, and therefore really know nothing about their personal lives/circumstances in order to make such an assertion. For example, some people may only use forums such as this when they are very desperate (or even mentally ill), and thus they appear to ‘whine’ all the time, but actually in the rest of their time they might be fighting on like a trooper and not making any complaints, and it could be venting on here that allows them to keep going in life. So please bear that in mind when making comments such as those you already have.

Also, regarding your comments to the OP, they weren’t being inpatient in my opinion so I don’t know why you made the comments you did to them. They were simply asking how long the report usually takes, which is a perfectly reasonable question. After all, if you don’t know how long it should take how do you know how long you should wait for the report before chasing? Also, the OP may need it for a particular purpose, for example to show to an employer, and how could they tell their employer when they would have the report if they didn’t know themselves? For most NHS services you are given some timescale, even if it is years, so I think it’s fair to expect one in this case. That is not the same as expecting instant service however!

Just to mention a kicker, the envelope my report arrived in was marked 'private and confidential', but had no name on it, so it was opened by someone else in error.  I sometimes wonder if having clinicians run clinics ends up undervaluing admin support.

Rose said:

all I see on this website is whining

Now you can include yourself. They only asked how long it usually takes to get a report.

Rose said:

Maybe it's because I am empathic

Maybe but looking at things it's unlikely.

Mine took about a month.

Rose said:

But I just don't understand how people can't see that there are other people that

Interesting. Did you score highly on the EQ (https://www.theguardian.com/life/table/0,,937442,00.html)?

If so, count yourself lucky.

I agree that cuts to councils are making things hard for everyone. I realise we're lucky to have the NHS.

But we're just sharing experiences here, often about the best and most diplomatic way to negotiate a system that's suffering chronic underfunding by government. Given the stress admin workers are under and consequent errors being made (I've mentioned these before), I think a phone call [edit: or email or letter or whatever medium you can cope with] about a report being typed up, after a few weeks if you've heard nothing, is reasonable to check you haven't been forgotten.

I agree completely. 

Agree with you - gentle reminders can actually be helpful to GPs etc, nothing wrong with being a bit proactive!  

Yeah I try not to whinge, my mum always says count your blessings which is true!  I'm not good at being part of a community so I don't really feel represented but being newly diagnosed late in life it's interesting to see other points of view.  I suppose we are all disparate with just one common factor - I feel empathy but sometimes struggle with some attitudes.  I prefer information to opinions, don't do FB or anything.  I guess the lesson on this thread is how different NHS experiences are across the country and to have realistic expectations.

I recommend that you write to the practice at which the person who diagnosed you works, asking for your report. There is nothing unreasonable about wanting the report in a reasonable amount of time. You are entitled to it, after all. I got mine very quickly (within 2 weeks after the diagnosis), but my whole diagnostic process was a LOT faster than others on here have experienced. The GP practice that referred me misfiled my diagnosis letter and couldn't find it when I went to my followup appointment, so it is possible for errors to be made, and that may be why you don't yet have your report.

Good luck!

I completely agree!! But I just don't understand how people can't see that there are other people that are worse off than them are still on a waiting list that could potentially be for years!! Like if you had a diagnoses count yourself lucky and be patient that's what I feel anyway. You know looking at our country and seeing the state of affairs when it comes to the NHS and when it comes to local councils and cuts to support services everywhere. It is basically acknowledgement that you shouldn't expect things to happen overnight. And yes it is good to push for the help and support you deserve and need but don't be expecting miracles is what I say. There are people on the streets there are old and vulnerable people with no access to health care services. And all I see on this website is whining and people expecting to get benefits overnight expecting everything basically. Autism is not a death sentence it doesn't stop us from being who we are. I can safely say and this is coming from someone that has asperges that this community doesn't represent me. Maybe it's because I am empathic and I don't think the world owes me anything but I'm really shocked tbh.

Hi Rose, I agree with your viewpoint and I feel only gratitude for the NHS workers who are doing their best in an overloaded system.  However, without being "self entitled", as an individual only I can champion my own cause!  There's nothing wrong with working to give yourself the best chance and outcome, tempered of course with patience.  Only persistence has resulted in a diagnosis from a switched-on and overworked practitioner after many, many years of misdiagnosis... I urge others to be respectful but to fight their corner for as long as it takes.....

You aren't the only person that has just been diagnosed and you aren't the only person that needs a report typed up. I've noticed a common theme on this website but with people that post that feel self entitled that medial professionals and other teams are going to click their fingers and give you what you want there and then. That isn't life you aren't important to the system over someone else. Patience is a virtue just be patient. 

Same for you too, ten years is impressive but it should not have to be like this, we are not alone, I won't say what I think of the Honourable gentleman MP Hunt and his parties policies...At least I have food, shelter, green spaces, a garden and a bed, some are not so lucky as me.

NHS and local authority have teamed up here - support is for mixed mental health issues but so far so good - mind you there is always the risk of funding disappearing and I have been struggling with issues for over 10 years now ..... Keep fighting and good luck to you

In Leicestershire the Community Mental Health Team have placed all autistic people under the care of social services and treat mental illness as secondary.  The mental health team discharged me as soon as they found out I was autistic and social services did not want to know at first.  Fortunately my GP did find some support but I am having to do most of the caring for myself, including looking for a job, whilst applying for PIP, ESA and HB, none of which has come through yet, although I am promised ESA from next week.

Yes that's exactly how I felt Jonsey, until I had a mental health crisis, I also lost my job at the same time.  It was the same when I was given a diagnosis of Coeliac disease.  It's because the NHS, Social services are facing austerity cuts.  I am not the only person to be left hanging, people with personality disorders, friends of mine say they face the same lack of care within the system, despite self harming.  So now I am wearing 'Autistic Rights and Disability T-shirts.