Young adult diagnosis?

[Frazzledbutcalm]

Cutting a long story short .... dd is now 20. She went through assessment for ASD 4 years ago (along with her brother) after her sister received her dx of ASD. At the end of the process we were told dd couldn’t be given a dx as she didn’t tick 1 box, they said she had a spiky profile and they struggled to fit her somewhere. They said as she can get a bus to college and likes music they can’t give her a dx, however, “I have no doubt if she’d come through the process at age 6/7 she would have been given a dx” (they were their exact words!)

So now, aged 20 she still struggles with communication/conversation (amongst other things), which impact her ability to work. Things came to a head recently when she was admitted to hospital and didn’t take to it very well at all - I ended up staying in with her.

Seen our GP this morning about re-referral and was told as dd doesn’t have any learning difficulty and holds down a job then assessment is not possible, it is not Autism. She just needs to learn communication skills as these are an essential part of life.

So what do I do now? Go private?

I’m happy to be told at the end of an assessment that she doesn’t have ASD, I just want a proper assessment, which I don’t feel she got first time round.

Also, can we ask CYPS (who assessed her) for her full medical file/notes?

TIA

as dd doesn’t have any learning difficulty and holds down a job then assessment is not possible, it is not Autism
What a load of rubbish. The ignorance displayed by people who really ought to know better is astounding.

These are the NAS Guidance notes for GPs if you NEED a GP referral, do ask to see a different GP and present a good case. www.autism.org.uk/about/diagnosis/adults.aspx

Definitely get the report from CYPS with all the diagnostics used and the scores. She'll have to apply for them in writing as she's an adult, (here I write everything 'from her' print it and she reads and signs it) can you ring CYPS and ask for their procedure on letting her have a copy? I have found there are (at least) 2 sets of medical records, GP records and Hospital records. However, the CYPS may keep files separately, I don't know, definitely ask them first.

My dd was dxd at 25 on the NHS after an 18 month wait and only got it then as there'd been a cancellation. It was only the ADI-R they used, BUT there were over 15 years of previous comprehensive private and NHS reports and dx of every co-morbid by Paed, SLT, OT and Ed Psych and the score from the ADI-R and all the previous reports (one of which suggested likely autism) went to a multi disciplinary team who concluded that it is autism.

You need to see someone who is experienced in diagnosing women. In your circumstances, I'd go private and ask which tests they do like ADI-R, ADOS, DISCO etc. You don't see DISCO mentioned much lately,
network.autism.org.uk/good-practice/evidence-base/diagnostic-interview-social-and-communication-disorders-disco

NAS Diagnostic Services www.autism.org.uk/directory/browse/cid=80~aid=1.aspx

Thanks blank .... I agree the wording used by GP were terrible. My other daughter got her dx of Autism yet is very academic. They now don’t use Aspergers dx in our area, Autism is always used.

I’ll look at those links, contact CYPS, then go from there.

To be honest I’m shocked at the way professionals speak to me negatively about an Autism dx when they KNOW my other dd has a dx of it. It’s like a slap in the face!

I sometimes wonder what professionals' understanding of autism actually is. DD and I have lost any respect for so many of them.

I have a letter from the Consultant at the hospital that she saw about a physical issue and headed 'Possible mild autism' alongside 3 other conditions they'd got right. errm no, she has an NHS dx of the whole fullblown caboodle really genuine can't dispute it Autism, why the hell do they put things like that on official correspondence? It irks me greatly because one professional then copies from another's letter and that misnomer will be all over her hospital records and her GP records unless I correct it in both places. And they don't like interference in their records at all.

That consultant has a Nurse that her patients can see. Off we went, the nurse said to me 'You can wait outside, she can see me on her own'
The thing is, DD ASKS me to be there because she knows she has communication difficulties, she doesn't always take in whatever any medic is saying, she also has CFS and a slow processing speed and sometimes doesn't understand. She's signed a form at our GP for me to be there, to deal with all phone calls, enquiries, arranging appts, etc and is happy for me to do so. She asks me to do that and to attend all her GP appointments.

That nurse's attitude gave DD a shock, I could see her anxiety level hit the stratosphere and I suggested the nurse ask DD what she'd prefer. DD wanted me there but the nurse wasn't happy. I went in with DD despite the glowers.

I tried to explain that DD will agree to anything if it will make the person giving her a stressful time end the interview, (If they said they'd organise a course on rock climbing which she's physically not capable of, she'd agree if it meant they would stop talking to her and she could just go straight home.) but I was treated as someone who is overbearing and controlling which isn't the case at all.

At the Consultant appt I said DD has communication difficulties and can't answer the door or the phone even when she knows who it is, and the consultant snapped 'Don't be ridiculous of course she can do that'

DD no longer wants to see anyone aside from her GP because she's sick to death of all the rest being told about her diagnosed and documented difficulties and them treating her as though she's a liar.

There's a lot more but I'll shut up, we all have it to deal with.

Good Luck with getting your DD's records and with finding the right person to do an assessment. Please let us know how you get on.

blank .... I completely get what you’re saying ... we have this with dd2 dx aged 11, she’s now 16. When professionals talk to her she just looks at me to answer for her. I’m also seen as the ‘cause’ of my dd not speaking. “How will she speak of you always talk for her”?
I would love to just sit there in silence while they wait for dd to answer ... they’d soon realise she can’t speak up! But I can’t put dd through the anxiety that this would cause. I’m also fed up of having to explain to each new person we see that dd has autism and communication difficulties etc .... I think it reinforces negativity and anxiety and low self esteem - her autism is on her medical records, WHY CAN’T THIS BE COMMUNICATED TO EVERYONE WE HAVE T O SEE??

I’ll keep updating with dd1 progress.

On a separate note, dd1 used to get DLA, then PIP (enhanced living rate) aged 16. We’ve just had her renewal and it’s been refused, refused at mandatory reconsideration. We’ve passed the deadline for tribunal as she’s been poorly, in and out of hospital monitoring for 7 weeks now. I don’t know whether to submit a tribunal application anyway, with a covering letter for why it’s late, or just start a new application. The reason she was refused is because she holds down a job and was well presented with manicured nails at the assessment interview. Sigh, sigh ..... she’s had 5 jobs in 4 years, leaving each one due to social/sensory issues. Her latest job she must have manicured nails and look a certain way. She does the job in hand but struggles when customers make small talk - she usually ignores them or smiles and doesn’t speak. I was so careful to get this point across and hammer it home .... but to no avail. They should walk a day in my shoes .. they’d soon realise what real life is like when you have a child/teen/young adult with difficulties.

I think it reinforces negativity and anxiety and low self esteem - her autism is on her medical records, WHY CAN’T THIS BE COMMUNICATED TO EVERYONE WE HAVE T O SEE??

I know, I feel the same. My Dd didn't start speaking for herself at all until she was getting on for 25 and even now it's very limited. She had her first ever long 'ordinary' conversation with a nice neighbour last year.

We had to see a pain specialist at the hospital and she refused to acknowledge me and said she wanted Dd to speak for herself. Dd was in bits, she twists her fingers when anxious, that day I thought she was going to dislocate all her fingers, she looked at the floor and muttered, it was as much as she could do. Nobody should have to be put through that. Then the woman told her because she was autistic, the pain she thinks she feels isn't pain, it's just a different sensation, so all she needs to do is tell herself it's not pain.
That would be all well and good IF it was a sensory thing, as you know sensory stuff has a cause, but the pain in question is intermittent, out of the blue intense nerve pain in her limbs. One minute she's fine, the next she gasps and holds the affected area and tears can stream down her face, it happens standing, sitting, at home, out and about, in the car, it can just happen once or it can repeat in the same area for hours. There is no movement or action that causes it. Looks as though we'll never know what causes it.
Dd has now refused to see any specialist for anything because in her words, due to the way she has been treated, 'they are all liars'

It's also awful when they don't give enough time for her to process a yes/no question. Couple of years ago, I had to stop a consultant bending her maybe broken wrist this that and the other way so quickly, he was saying does it hurt here or here or when I do this or that and because she wasn't screaming or reacting instantly, he assumed she wasn't feeling any pain.

They should walk a day in my shoes .. they’d soon realise what real life is like when you have a child/teen/young adult with difficulties
Too right, they are just clueless.

Re PIP, ring the Tribunals Service, they are lovely people not connected with the DWP and they will advise whether you can proceed with an appeal due to your circumstances or if you need to start over.

DLA to PIP only happened a couple of years ago, like many others, I found DWP hell to deal with but went to Tribunal. We didn't even have a hearing, the Judge said that our case was extraordinary because it was so obvious with all the documentation I'd provided that Dd should have been awarded enhanced rate for both just on first reading of the application, DWP had given it for care but not mobility.
renewed BB she'd had since about age 14 ran out during the process so she had to be assessed for a BB by the Council's physio and their assessment scored her less mobile than the DWP Assessor had done. Judge awarded enhanced rate for both and said 'It is inappropriate to fix a term' which means hopefully only a very light review after 10 years.

You WILL get there, just keep battling, it took 2 years to get the Tribunal decision on PIP and 3 years to get something else similar, but I did it. You can do it too

You are literally describing my 16 year old! She twists her fingers when anxious ... I never even noticed - it was her 1-1 who noticed in school in year 9 and mentioned it to me

She has the same problem only reverses it ... she thinks all professionals think she’s a liar

She fell 2 years ago and I knew she’d broken her wrist. It didn’t show up on X-ray and no matter how much I persevered they kept saying it was fine and she had to use it. I knew otherwise though. 3 months later when things were no better they finally, reluctantly agreed to do an mri ... they found a break! No shit Sherlock! We’re now 2 years down the line and she still can’t use her hand.

I’ll ring the tribunals service, thank you.

That's appalling about your Dd's wrist, the delay in dx and now the immobility.. Is there any help like physio available for her, in some areas you can self-refer. Or OT, they have a lot to help poor hand praxis, we have 2 sorts of squishy sponges and theraputty from them and I buy quite a bit from the firm 66fit, they aren't a supplier of things for disability but they have some good sensory stuff as well as physio type stuff like spiky balls, soft balls, grips, small weights, resistance bands and a load of other items that may make a difference.

Fingers crossed you can go direct to Tribunal and they will accept the delay.