Published on 12, July, 2020
Hi,
I'm Ian and I am 53. I was diagnosed with ADHD last year.
Since then I've been looking at some of the stuff I do that are classed as neurodivergent traits.
I see a lot of these in my son who is trans and has been struggling with school and self harm.
As a result and thanks to our fantastic GP he has been referred for an autism assessment.
The diagnostic pathway for ADHD and Autism is frankly a mess where we live (North Yorkshire). Adults are currently being directed to an online "profiler" which then results in 90% of users being given "helpful" advice like go for a long walk or try using a planner.
For children ADHD comes under the local CAMHS and autism is done by a separate organisation and is about to be passed onto a new organisation.
I'm involved a little with York disability rights forum where we have recently crowdfunded to take legal action over the use of the profiler which breaks the NHS constitution amongst other things.
My son has just gone into year 10 and things at school have recently got much worse to a point where we might have to withdraw him and look at alternative provision.
I'd be interested to make contact with any parents who are on a similar journey with school stuff. Also any parents in North Yorkshire who might want to meet up and chat and share experiences.
Sorry Ian to hear everything that you and your son are going through. Everything is such a sprawling mess these days. I know from personal experience that things in the North can be a lot more brutal in the way you're treated, (being heavily ex-industrial etc.)
What you and Autonomistic have highlighted is abhorrent. All of this stuff they impose is simply wrecking lives, no other way to describe it. It beggars belief to be honest. Little common sense, very little compassion, so many obstacles. Reaching absolute MH crisis can get very dark indeed, very scary for folks with ASD. And the advice such as go for a long walk, is just a joke.
Your GP sounds nice but why has everything always got to be this exhausting fight for every tiny little thing nowadays?
Kudos by the way in regards to the disability rights forum. Best of luck with everything
Hello NAS89137,
Welcome to the community and thank you for sharing this with us. You may want to use our Autism Services Directory to search for relevant parent groups in Yorkshire that may be suitable. You can find the Directory here: https://www.autism.org.uk/directory
All the best,
ChloeMod
NAS89137 said:Interestingly the person behind the profiler (Professor Amanda Kirby) has ADHD and is a trustee of the ADHD foundation. I'd like to think that someone in her position would be doing all she could to help fellow members of the ND community secure a diagnosis.
Yes I agree. It says on their website "Amanda is also the founder and CEO of Do-IT Solutions, a tech for good company". It seems 'tech for good' isn't always used for good purposes
On the CCG page it states that the additional criteria modules have been developed by the commissioners but presumably they had to work with the Do-IT Solutions to achieve that:
https://northyorkshireccg.nhs.uk/north-yorkshire-and-york-adult-adhd-and-autism-assessment-and-diagnostic-service/
"Commissioners in North Yorkshire and York have designed additional specific modules within the Do-IT Profiler system which are the ones determining eligibility for referral based on three assessment criteria. Commissioners have developed a mechanism for scoring the patient’s response to the three eligibility criteria, and those who meet one or more of these directly to The Retreat for assessment.
(Note: The Do-IT Profiler itself does not make decisions on who is accepted or not for referral.)"
Interestingly on the next update the system is no longer being referred to as the Do It Profiler. I wonder if that suggests some distancing between them, as the implications of how the system is being used become apparent
https://northyorkshireccg.nhs.uk/north-yorkshire-and-york-adult-autism-and-adhd-assessment-and-diagnostic-service/
"With use of the online neurodiversity screening tool the North Yorkshire & York Platform for Adult Autism and ADHD Referrals (previously referred to as the Do IT Profiler)"
NAS89137 said:I spoke to my GP about it (her son has autism and she is fantastic) and she said she referred someone she described as "the most ADHD person I've ever met". He "passed" the profiler but her she or him have been advised as to what the next steps might be.
As far as I can see people who are on this system are not even clearly told if they on a waiting list or not. If they are not then that also prevents them using the Right To Choose system to shorten waiting times (as is often recommended on here).
That article linked above suggests the new approach is "designed to connect people with support more quickly". I suspect that only means the few who are prioritised and the rest are only being given basic and questionable 'advice'
NAS89137 said:The worry is that other commisioning bodies might look at think "that looks like a good idea" and before we know it it's being used all over.
Indeed. I can see how parts of the tool might be useful during the assessment process but certainly not as an alternative to it. If used well it could actually reduce human input into the process and mean that people can be assessed quicker. Instead it is being used to deny access to assessment.
It is already a postcode lottery for any post diagnostic and ongoing support. Now assessment is also affected by where someone lives.
Thanks. It's a pilot which was extended from 3 months to a year. Interestingly the person behind the profiler (Professor Amanda Kirby) has ADHD and is a trustee of the ADHD foundation. I'd like to think that someone in her position would be doing all she could to help fellow members of the ND community secure a diagnosis.
I spoke to my GP about it (her son has autism and she is fantastic) and she said she referred someone she described as "the most ADHD person I've ever met". He "passed" the profiler but her she or him have been advised as to what the next steps might be.
The worry is that other commisioning bodies might look at think "that looks like a good idea" and before we know it it's being used all over.
Speaking from personal experience my diagnosis was life changing and it makes me so sad to think that there are many out there living tough lives wondering what might be causing their problems.
Hello and welcome to the community.
Your comments about the diagnostic pathway in North Yorkshire have just sent me down a rabbit hole of research and I'm very shocked by what I found. Thank you for raising awareness to the wider autistic community on here.
For anyone not aware (as I wasn't) further information can be found here:
https://ydrf.org.uk/2023/03/26/autism-and-adhd-assessments-to-be-refused/
https://ydrf.org.uk/autism-and-adhd-assessment-access/
"adults who approach their GP seeking an autism and/or ADHD diagnosis will be refused access to assessment unless they meet one or more of the following criteria:
It is a very worrying development and unless challenged may be adopted by commissioners in other parts of the country. I fail to see how this process can possibly be compliant with NICE guidelines on diagnostic referrals.
Undiagnosed autistic people should not be forced into crisis before they can access assessment and get the answers they so desperately need. It seems to be a cost cutting exercise and demonstrates extremely poor understanding of autism by the people making these decisions. It's bad enough that there are no support services in place for adults but to restrict access to diagnosis is truly shocking