Autism and Aspergers
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ADULT PDA AUTISM How to access assessment and support

emmuemmu Member Posts: 5 Listener
edited August 2019 in Autism and Aspergers
Hello. I need a ask a long question. I am really at the end of coping. The question centres around PDA autism. I have spoken to a lot of people, including the autism helpline and assessment centres,  but if I don't access some pathway of support soon I don't think I can be responsible for what I do next.

My son is 24. He has a a 20 year old sister. My husband and I gave them a beautiful full life; not materially, but in terms of gentle, consistent love and support for everything they were and everything they did. I could see my son was dramatically different to his peers and I thought he was highly evolved and I just loved him. The 20 year old is an outcome of this upbringing; hugely happy, confident and successful. However, she won't come home because of her brother. My husband left 9 years ago and professes to hate our son. We divorced. I felt I had to choose our son, but I get where my ex-husband is coming from. The rest of my family don't even say his name. There is no christmas or birthdays because my son is disengaged and gets upset around ideas of the passage of time. 

Why? Because our son displays all of the traits of PDA autism, minus any aggressive meltdowns. He does diversion and shutdown. He is the gentlest, most passive and frustrating person. He has no shame (i never actually wanted him to but ... ), he has no concept of authority. he is kind of fearless but will not attempt any action or see anything through. He talks like the most confident well spoken person you ever met - which sure as hell does not help his case. He is sitting in the garden at the moment, in the rain, naked and listening to white noise. He has advised me that he needs to rip all of the carpets up because of the heat. I said 'feel free'; like how the hell do i have the energy to give a damn about carpets? Since he started smoking cannabis there has been a huge improvement in his sleep and the terrible night terrors have stopped. Prior to that there was no day or night pattern and the only thing that calmed him was rainstorms. He has poor executive function except for when he is hungry. Then he goes to a large supermarket and efficiently steals as much food as he needs, choosing it with great attention to its nutritional content and not batting an eyelid as he pretends to pay for it. Occasionally I crack and ask him to leave. He goes for a few days; steals food to live and then returns. the atmosphere at home is horrible. I can't work full time because he is a danger in the house. I can hardly express how desperate and isolated I feel. This week I phoned CRISIS and, true to form, they could offer nothing, just like MIND, SAMARITANS and all the others; suggested I want to my GP .......

I can't afford to look after him properly. He hasn't been to a dentist for 10 years. He has no phone. His clothes are just a heap of random stuff he has found. I make beautiful healthy food for him but that's really all i can afford. My son has never engaged in formal sport, cannot swim, drive, access benefits etc. If you praise him he goes into shut down. He is hugely manipulative and 'bends' reality until you don't know what the original request even was. He was excluded from school at 16 following his stunningly good GCSE results. The school said he was too 'malign' to be allowed to stay.

Sorry. Will now get to the point. We (now I) have been to the GP countless times since he was aged 8 and hallucinating - possibly I now wonder due to years of no sleep. We repeatedly asked for referrals but I didn't know to what. Now I need to get my act together (and this time I mean it :sweat_smile: . I have requested his medical records so that I can at least understand why we received no medical response. Then I will make an appointment with the GP, ignoring the looks. Then I was thinking of taking a small group of people with me to the appointment who don't look like they occupy hell. I am afraid I am looking dreadful - beyond burnt out, with eyes like slits.

I need some companions to assertively and politely access help on my son's behalf.

So what do we say? I think he has PDA autism based on my 24 years of living with him. I am not a psychologist or a psychiatrist so my credentials in this area are poor. If I say this (again) the GP will stare extra hard at the computer screen. Last time we went to ask for a PDA autism referral the GP at last turned to my son and said "oh. so do you have delusions of grandeur?". I sighed deeply and said something pithy - never rude, but so exasperated. The GP turned to me and said there was no such thing as assessment for anyone aged over 18.  The GP added that, as he was stealing from supermarkets, the prison system would soon pick him up and that would be good because prisoners get help. This is the sort of advice I am given. I am so shattered.

In truth, I think he needs 2 referrals: one to a well trained mental health professional and one to a PDA autism assessment centre - the problem is the autism questionnaire doesn't really pull out the issues around his behaviours. Maybe something else? How can I articulate this in a way that a GP will respond to? I have taken NICE advice etc. but I think they think I am trying to be clever.  I am waiting for the medical records to be sent through then  want to make a GP appointment. I need to hold my ground. I need to get him some help whilst I have a fragment of resilience left.

So you people who have walked a similar path, please advise me - what should the advocates I take with me to my son's GP appointment request?

Thank you for taking the time to read this

Emmu




Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,730 Disability Gamechanger
    Scope
    Senior online community officer
  • SparkleSheffieldAutismAdvisorsSparkleSheffieldAutismAdvisors Member Posts: 32 Pioneering
    @emmu We really can not imagine what you are going through.  Everyone here at sparkle sheffield as a child with autism and some of them also have PDA.  But we still can't understand how difficult it is for you especially without support.  Your son is still entitled to help until he is 25 years old. When he is 26 there isn't a lot out there. So we are going to have to act VERY quickly.  Please can you contact Autism Union at [email protected] as they represent parents by advocating for them.. So they do all the hard work for you. (just copy and paste what you have put on here) As our fear is that The Local Authority will drag their feet in terms of support because he will be 26 soon.  Autism Union will push through to try and get him what he needs. Also they team up with equality and human rights who will advocate on behalf of your son. Also it may be worth while contacting the PDA society. Here is their details https://www.pdasociety.org.uk they maybe able to get you some additional support and give you some advice.  There are other professionals Autism Union can put you in touch with to help.  You also desperately need respite for you and your family.  You could ask them to look into that for you too.  We can send you a day spa voucher for you and your daughter to start with we can send it to you through Autism Union if you give them permission for your details to be passed on to us.  But more then anything you need someone to be your voice and Autism Union can do that. 
  • SparkleSheffieldAutismAdvisorsSparkleSheffieldAutismAdvisors Member Posts: 32 Pioneering
    @emmu The other things is.. Ask Autism Union about getting power of attorney so you can act on your sons behalf in terms of he affairs to do with things like benefits and talking to professionals etc. 
  • HartleyHartley Posts: 114 Courageous
    Hi
    If im reading that correctly "theres no such thing as an assessment for over 18yrs old" paraphrase.

    Total nonsense as ive heard of stories of 81yr olds being diagnosed And i myself was diagnose with Autism(not aspergers)
    On the 28th of June this year...Im 51years old!..

    There are scales like the Cambridge behaviour questionnaire/Empathy Quotient(EQ) And developmental history questionnaire ...Once he fills these in..theylll have a good gauge as to where is he...

    I scored significantly high on all test,for Autism.
    Some of his behaviour at this present time,due to the THC in the Marijuana ,may be partly due to the aforementioned.

    Marijuana has a different effect on Autistic people in my opinion...Self studied many moons ago 😄 i shouldnt chuckle as my self medicating years were actually horrific...They can often exasperate matters.

    Push for an Adult Autism assessment.
    You need to be referred by the GP. No self referrals.

    In many ways i actually despise gps and the medical field...but ive met enough unique amazing souls that work within this  medical system (specialist,Drs) where you connect so well...and you can witness it in their eyes and he can yours that he is conveying that he so desperately wants to help you and is for you..but the system chokes goods Drs like this..

    Sadly ,youre going to have to fight..And i gauge ,youre no stranger to this concept!

    Try the above....im  no expert but am speaking from 100% experience...51yrs of a war torn life...its strewn with horrific experiences...as many neuro typical and non experience...We're all in this soup right....but some need that extra support ,and it seems to me ,to be a very hollow platitude..a half assed gesture of help..that when tested...Really has no merit or substance....I'll continue to ramble and ruminate so will leave it there...but keep seeking..

    The aloofness may be a masking technique or sociopathic ...its really not for me to say and i wish not to offend or assume to much..

    Let us know how things go...but im happy to onwardly assist if i can at all. 
  • BirdsnbeesBirdsnbees Member Posts: 75 Pioneering
    Best wishes with it all, sounds real tough. Wishing for you and your son to start following the light at the end of the tunnel

    My one piece of advice would be can you change GP? Even if its a slightly longer journey?

    It's your legal right to register with whatever GP you want. They have restrictions on who they will take in particular areas, however you can always change GP and request to see a different one in your current practice.

    I wholeheartedly agree with @Hartley re medical professionals.

    In my area you can self refer to the autism team - check your local team to see if you can self refer

    Failing that, ask to see a different GP in your practice or if you're worried about asking change GP. Your GP sounds terrible and unsupportive. Sounds to me like they've made a judgement on your son's behaviour which is entirely inappropriate. They need to be doing whats best for your and your son's medical care. Really makes me wonder how these snide comments snooty doctors ever remotely considered entering a profession that requires a bedside manner
  • April2018momApril2018mom Posts: 2,869 Member
    Hello! 
    Find a new GP. Advocate for your child. Can you self refer to the autism team or not? Call up on Monday. 
  • OpusOpus Posts: 47 Courageous
    edited August 2019
    @April2018mom

    In my area you cant....not sure regionally..
  • HartleyHartley Posts: 114 Courageous

    Getting a diagnosis – the process

    Autism (including Asperger syndrome) varies widely from person to person, so making a diagnosis can be difficult. A diagnosis – the formal identification of autism – is therefore best made by a multi-disciplinary diagnostic team.

    Some diagnostic teams accept self-referrals, but in most areas, you will need a referral from your GP. If you are seeing a different health professional for other reasons (for example, a psychologist if you have depression), you could ask them for a referral instead.

    Step 1: speak to your GP

    Book an appointment with your GP. Make sure your diagnosis is the only thing you are seeing your GP about. If you try to mention it during a consultation about another subject, your GP may not address it fully.

    Step 2: present your case

    Your GP needs a reason to refer you for diagnosis, so you will have to explain why you think you could be autistic, and how a diagnosis would benefit you. If you think you might want help with this, ask someone you know to come with you.

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