Help for my son

[Francesca2210]

Hi I was wondering if someone could give some advice. My son is 20 and I am certain he has Autism or Aspergers. He lives with me and finds people, emotions and other things very difficult. He will not go to the GP to ask for a diagnosis by himself or with someone, he would find asking for help very hard to do. I took him to the GP in 2002 when he was young but GP said to speak to his school and the headmaster referred him back to the GP but nothing was done in the end. He struggled all through school and did not go to college. He finds it hard to keep a job unless it is gardening which he enjoys because he likes to work alone. Is there any way for him to get a diagnosis without having to talk to anyone? Does anyone here have any suggestions? Thank you.

[Nozmo]

Hi Francesca,

As far as I know your son would have to be involved in the process but there might some private practices that can diagnose in a different way.

I know I'm always saying it, but I would advise talking to somebody at the National Autistic Society about your situation. Here's the link to the confidential helpline

autism.org.uk/get-involved/...

It's shocking that the original diagnosis fizzled out but no great surprise. I have found (the hard way) that you need to push after every step or nothing further gets done. Have a look at some of the things that Hidden has posted about this.

It would have been ideal to have had him diagnosed at school as evidence would have been presented by his teachers. Also, professionals would have observed him in school, where he probably wouldn't have even been aware he was being observed half of the time!

I really would talk to the NAS. They will be able to tell you what your options are. Sorry I can't be of any more help, hopefully someone else here will be able to give you some better advice. Best of luck.

[Hidden]

Another tragic case of ignorance by GPs. My boys were late diagnosis 17 and 18 years of age. Ours was a case of blatant incompetence by schools and CAMHS.

I am sorry but the only way he is going to get a diagnosis if going via a GP for a Referal to Adult Mental Health Serivices or Privatly at £3000. If you decide to go Privatly some are much better than others you must seek advice from someone like NAS or PM me.

Can you explain once he is diagnosed he will get support from Autism Iniative but he needs a diagnosis and a referral. Just as a suggestion if you go onto No 6 Edinburgh Facebook Site and show him there are loads of guys like him. He will also get help with applying for PIP, don't try this on your own it's complicated. You can apply without a diagnosis but would need help to explain the issues.

facebook.com/Number6OSS

facebook.com/PlanetOughtism

This lady has started a name and shame page because of the shocking amount of failed cases , so many with tragic results.

The main issue is anxiety, if that is supported it helps. Tell him there are so many wonderful talented people with Asbergers. He will also be entitled to a bus pass. You can get one of these early , you need to get the Consultant to sign a form about mental health issues and how a bus pass will help his social skills .

Unfortunately with him being over 18 it's up to him to instigate procedures. You can go with him to surgery at all times. If the GP refuses a Referal I suggest in the consultation you infer that you will be reporting him to the Complaints Department of your local NHS for starters because this young man should have been referred years ago.

The more people who name and shame the better.

Good luck xxxx

If you have his school reports as evidence that's great. Tell your son you will do the majority of talking for him. If he can explain things to you and you have them in writing that's great. Whatever makes it easier for him.

[Hidden]

nice.org.uk/guidance/cg142/...

This explains what happens.

There is also the possibility he has some of the comorbid issues like dyslexia, dyspraxia, dyscalculia, unless he is tested you won't know. Evidence will be found in school reports. There is Irlen Syndrome associated with dyslexia.

Unfortunately since he is now an adult, over 18 you have to pay Privatly for the testing. It starts over £250 to £500. Report lasts four years. Useful for PIP.

Irlen testing sorry it's again private. Eye test is free but specialist testing is £50 , they do another test a few months later £50 , then the lenses you can't get on NHS are from £130 plus frames ..l

bdadyslexia.org.uk/

You can do some of the testing at home before you go to GP.

The word CLUELESS you will learn as you learn yourself.

Both Nozmo and I have vast experience of incompetence as so many other folks.

I am now trying to get a diagnosis of Pathological Demand Avoidance Syndrome , that's another story. Don't know enough about your son to comment.

pdasociety.org.uk/resources...

The role pay comes in two parts, one they think they are in charge , eg teacher, the other is role play avoidance , my youngest has a doctorate in that.

Look through all my posts gives you loads of issues AS folks have.

Don't forget each case is unique , it's like a fingerprint.

[corriefan]

My son was diagnosed at the age of 21 privately by this charity. actionforaspergers.org/diag...

[Hidden]

Not being a damp squid but I would be asking their experience , how long they had been qualified. Wonder if they have specific areas they cover?

Saying that the so called experts we saw had been there years and getting it wrong for years.

Sad we have to go to these lengths to get a diagnosis.

[rosie-in-the-garden]

Please don't quote me on this but I'm sure as eggs are eggs, that a GP has to see all patients that are registered with him at least once a year. Something to do within seclusion I think.

I only know about this because of my brother. He had (wrongly) been diagnosed with schizophrenia, wouldn't take his meds and cutting a very long story short, the GP basically chose to ignore his very existence which sadly led to his death. He was a problem patient for sure.

However, because of his unsociable behaviour, not only did he get a wrong diagnosis, little if any monitoring over medication and nothing by the way of support, he also missed out on the tests that we are all supposed to have such as cancer screening.

At that time there was nothing in place to support patients who's very illness causes them to avoid seeking help. Six days after my brother died, a law was put in place so that the vulnerable wouldn't fall by the wayside. This is where the bit about a GP seeing all his patients at least once a year. At the time I was told that this would include allowing patients direct access to the GP without having to deal with receptionists or waiting room and should include a home visit for those who cannot deal with visiting the GP, such as anyone suffering from agoraphobia.

Whether or not this law is still in place I couldn't say but I bet the citizens advice people or the charity Mind would. It must be worth a try. I wish you good luck but most of all, I wish you strength because that is what you will need more than anything. Just remind yourself that your son is entitled to treatment the same as the next man. It is a basic right and one you shouldn't have to fight for, but you will.