Published on 12, July, 2020
Hello all I am new here.I am 42yr woman and have been given a working diagnosis of Autism and ADHD along various other things back in June. I am now on the 2-3 years wait for the official diagnosis.I have been on Universal Credit for 'Agoraphobia' as that is what I thought I had (and slowly ruined my life for the past near two decades). Now I have the real reason (I had to put my foot down with the Mental health nurse and declare 'I know there was something else going on',) I am wondering if it is worth asking for a re-assessment due to the major difference.I have been unemployed for the last decade and housebound in my parents house for over a decade due to this and working is nearly impossible for me (in any usual sense of the word). I am only getting the lower band of UC and terrified they see my 'agoraphobia' as treatable and still expect me to work. Yet due to this I have been unable to gain enough money to actually start to move my life forward. I was wondering if everyone else is on the lower band or if it was worth seeing if I am eligible for the higher band. I am looking to finally move out and live by myself (having been accepted to the social housing lists in my county) yet I am finding it hard going on the lower UC (even with the little help from lower mobility PIP).
Thanks.
I'm in a similar predicament. I am 48, unemployed due to, well, a lot of things besides ASD. Living with my parents. I want to move out, get a job (again), maybe buy a cheap house somewhere, have a girlfriend (possibly if I can find someone that would tolerate me).
My advice is to tell the jobcentre about the asd/adhd, but it's unlikely they will reassess you, unless you haven't had one for a while. They will probably hassle you less. Unfortunately I lost my PIP and was so burnt out after the second round of appeals I gave up. PIP and ESA assessments are weird. PIP I went from enough points for lowest level PIP to zero points, then 3 points in 2 years, yet my circumstances haven't changed. The ESA assessor, on the other hand, was more interested in mental health than anything else and after having a frank discussion about my state through Covid he said he didn't need any more. My adviser from the Jobcentre rang me up and said she wouldn't be calling me any more, a week later.
I've been wondering whether to go private for the adhd diagnosis. I am told the waiting list is currently around 7 years in my area and I've been on the list since 2020. The cost is prohibitive, but having the diagnosis would probably make my life a lot better and afford me access to medication that can actually improve my life.
I am in a similar situation to you. I want to move out, get my own place etc.There is a law that you can use to have your assessment done by a third party company that has a contract with the NHS. It is called 'Right to Choose'. I checked with my mental health nurse and she says you can use it if the wait with your chosen company will be less then the NHS list. Though they HAVE to state they accept NHS patients. I dont know if I can link other websites here but it is websites like 'adhd-360'. (they do adhd and asd so I will be going with them though I am waiting until Mar next year, if I hear nothing from the NHS)Less hassle is what I would like. They only call me every 3 months, but they have me on the 'work related activities' and I worry they see me as 'agoraphobia = treatable = we can give her a deadline when this will be fixed'.Thanks guys.
Saeryne said:It is called 'Right to Choose'. I checked with my mental health nurse and she says you can use it if the wait with your chosen company will be less then the NHS list. Though they HAVE to state they accept NHS patients.
I looked at PsychiatryUK under the 'Right to Choose' rules, but most places are currently not taking new referrals, for whatever reason. I think a lot are saying after Covid the aim is more towards dealing with Children and their issues.
Add to that the current shortage / lack of ADHD meds worldwide and it's a bit of a pooch screw. My friend was diagnosed with ADHD last year and he said to me his provider had learned about the potential shortages and given him enough to tide him over for about 6 months, but he has started only using them on work days, because there is no end to the current issues, that he can see.
I think the main killer for me is the zero focus/concentration. If I could treat that one problem, that would fix maybe 90% of my life. For now I struggle.
I hope your situation improves, Saeryne
Ohh that REALLY rubs me the wrong way that 'lets focus on the children' part. What about the adults who lives are already messed up because they didnt bother to look into it. Obviously a case of already broken so not point trying to fix it (so to speak). I despise such half-jobs where they ignore the result of their own ignorance.For me knowing for sure is more what I am after, the meds part I can worry about after that (though I hate taking any meds past painkillers so that might be an issue for me).