Getting tested — Scope | Disability forum
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Getting tested

rachel3471
rachel3471 Community member Posts: 39 Listener
I'm in the process of getting my 11 year son tested for autism or adhd
I've been with my partner 13 years I think he has either of these I've told him 2 go doctors 2 get tested but they don't want 2 no how do I get him tested plz

Comments

  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Hello there @rachel3471 and thanks for reaching out. How is your son finding the tests? 

    If your partner isn't keen on getting tested it might be wise not to force things with them. We all have a right to manage our own conditions and diagnoses by ourselves. What we decide to do is a personal decision. 

    There could well be valid reasons for your partner not wanting to speak to anyone about whether or not they have autism or ADHD, so it might be worth an open conversation with them to understand this, without any pressure or judgement.

    A diagnosis can often mean better chances of getting support. It also helps for long-term management of conditions. Are these positives something you've discussed with your partner? 
    Online Community Coordinator
    Scope

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  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,561 Disability Gamechanger
    NHS don't want to test adults tbh.  Waiting lists are already huge, so they're focussing on children who will benefit from help while still in education.

    You can pay for a private assessment, but they are very expensive, and the waiting lists are still long for those.
  • rachel3471
    rachel3471 Community member Posts: 39 Listener
    Hes not being forced into having a test he wants 2 have 1
  • rachel3471
    rachel3471 Community member Posts: 39 Listener
    My sons doing it though school but it takes along time I've got a first workshop on Wednesday 
  • rachel3471
    rachel3471 Community member Posts: 39 Listener
    Hello there @rachel3471 and thanks for reaching out. How is your son finding the tests? 

    If your partner isn't keen on getting tested it might be wise not to force things with them. We all have a right to manage our own conditions and diagnoses by ourselves. What we decide to do is a personal decision. 

    There could well be valid reasons for your partner not wanting to speak to anyone about whether or not they have autism or ADHD, so it might be worth an open conversation with them to understand this, without any pressure or judgement.

    A diagnosis can often mean better chances of getting support. It also helps for long-term management of conditions. Are these positives something you've discussed with your partner? 

    Hello there @rachel3471 and thanks for reaching out. How is your son finding the tests? 

    If your partner isn't keen on getting tested it might be wise not to force things with them. We all have a right to manage our own conditions and diagnoses by ourselves. What we decide to do is a personal decision. 

    There could well be valid reasons for your partner not wanting to speak to anyone about whether or not they have autism or ADHD, so it might be worth an open conversation with them to understand this, without any pressure or judgement.

    A diagnosis can often mean better chances of getting support. It also helps for long-term management of conditions. Are these positives something you've discussed with your partner? 
    Y do u get the impression that he's being forsed 2 have a test he wants 2 be tested for how he is
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Oh I misunderstood @rachel3471 when you said: "they don't want 2 no how do I get him tested plz" I thought you meant your partner didn't want to get tested. My mistake, and I'm sorry for the confusion. 

    You could try looking into Right to Choose or is there another GP you could speak to about it? 

    I'm sorry your partner's GP is being so unsupportive, that must be frustrating for you all.

    Let us know how your son's workshop goes next week :) 
    Online Community Coordinator
    Scope

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  • rachel3471
    rachel3471 Community member Posts: 39 Listener
    Oh I misunderstood @rachel3471 when you said: "they don't want 2 no how do I get him tested plz" I thought you meant your partner didn't want to get tested. My mistake, and I'm sorry for the confusion. 

    You could try looking into Right to Choose or is there another GP you could speak to about it? 

    I'm sorry your partner's GP is being so unsupportive, that must be frustrating for you all.

    Let us know how your son's workshop goes next week :) 
    Oh sorry hes ask 2 docs both said don't think u have adhd how do they no I live with him it runs though hes side of the family hes hard work I no he has something 
    Ty for your help

  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    That's okay @rachel3471, thanks for explaining it all-  that is frustrating, but see if you can ask the GP surgery about Right to Choose. 

    You and your partner might also like to get in touch with National Autistic Society, as they have a helpline and community which offers support as well. 
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    Scope

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  • rachel3471
    rachel3471 Community member Posts: 39 Listener
    Hey Rachel, I know you posted a while ago but as an adult diagnosed with ASD aged 50 I would say it IS possible to go on a NHS waiting list (I waited 2 yrs), but I also had resistance from my GP surgery. I ended up asking one of the senior nursing clinicians whom I'd seen quite a few times over the years (for various things) because I felt she knew me best. Even so, she did say 'I don't think you're autistic, you're just zany!', but she did agree (after I strongly insisted) to put me forward for testing. I had a few things about issues on my medical record so that might have helped. Plus I went armed with some online test results (AQ test). It is a long haul but it can be done, I think you just have to keep insisting and demanding answers. I was detrimentally  misdiagnosed for alot of years, don't mind saying I'm quite bitter and angry about the lack of awareness with some GPs and a total reluctance to bother. I know the NHS is busy and skint but if you went to your GP with a limp and they said your leg wasn't broken you'd be saying 'Well what IS wrong with it then, because I can't walk!' and they would give you an explanation and treatment plan. Somehow when it's invisible things of the mind it's like it doesn't need addressing or it's not real or you should live with it or sort it out yourself, even though it may adversely impact a whole family's life worse than any limp. I think some GP practices are more open minded than others - I think in your situation I might ask polite questions of a different surgery just to test the waters and see if it'd be worth jumping ship! Or ask to see a different GP within your practice as it seems some 'believe' in these things and some don't so much. I wonder if the younger ones are a bit more clued up. Don't get me wrong, there are so many of these issues it's a minefield finding the name of the one that affects you and a 'General Practitioner' is just that - general, not a specialist, so I'm sure it's hard for them. But they have the power to refer you to a specialist. If something's hindering someone's life surely it's just as valid if it's ADHD or a long term illness? After all, as I always say, some people with long term illnesses can take pills to give them a normal quality of life - I can't. (No offence to anyone else suffering who can't get relief - I'm thinking more of my own thyroid condition which I don't often remember I have as long as I take my medication!) So if I have to struggle forever at least let me know why I'm struggling so that I stand a better chance of sorting it out myself, if that's what I'm going to be left to do (and it is). Good luck!
    Ty ive printed that form 2 fill in for him I'm going 2 ask 1 of the receptionist who's worked there for many years 2 see who's the best person 2 see as we have about 4 or 5 docs at our surgery 
    Like u said it is an illness and wants sorting its getting 2 much for me now with having him and my son both with problems sons getting sorted though school but slow progress 
  • Biblioklept
    Biblioklept Community member Posts: 4,387 Disability Gamechanger
    NHS don't want to test adults tbh.  Waiting lists are already huge, so they're focussing on children who will benefit from help while still in education.

    You can pay for a private assessment, but they are very expensive, and the waiting lists are still long for those.
    I get why you say about children and them benefitting from additional help in education (although schools should provide support even without diagnosis) but I'm a strong advocate for adults getting diagnosed! It was life-changing for me and finally helped me understand myself and work out ways to manage myself better. I already knew if that makes sense, but having someone else agree was so validating.
    I wish there were more resources in it so they could focus on everyone that needs it. 
  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,561 Disability Gamechanger
    NHS don't want to test adults tbh.  Waiting lists are already huge, so they're focussing on children who will benefit from help while still in education.

    You can pay for a private assessment, but they are very expensive, and the waiting lists are still long for those.
    I get why you say about children and them benefitting from additional help in education (although schools should provide support even without diagnosis) but I'm a strong advocate for adults getting diagnosed! It was life-changing for me and finally helped me understand myself and work out ways to manage myself better. I already knew if that makes sense, but having someone else agree was so validating.
    I wish there were more resources in it so they could focus on everyone that needs it. 
    I would also appreciate getting diagnosed, but as you say the resources just aren't there now.  There's been a huge increase in people suspecting autism and/or ADHD over the past few years and there just aren't enough assessors to manage that increase in demand.

    Reality is, a year or 2 waiting in a kids life, struggling with education, has far greater long term impact than the same time waiting in an adults life.

    Ideally there would be many more assessors in training now, so that everyone could get assessed within a reasonable timeframe, but until that happens, I think they should be focussing on younger people first.


    rachel3471 said:

    Like u said it is an illness and wants sorting its getting 2 much for me now with having him and my son both with problems sons getting sorted though school but slow progress 
    Autism isn't an illness.  It's a neurodiversity.  There is no 'cure' so it can't be sorted as such.  Your partner could still be learning to manage situations more effectively without having a diagnosis.
  • rachel3471
    rachel3471 Community member Posts: 39 Listener
    He needs help controlling hes outburst so they not going 2 give him any meds unless he was diagnosed would they
  • rachel3471
    rachel3471 Community member Posts: 39 Listener
    He needs help controlling hes outburst so they not going 2 give him any meds unless he was diagnosed would they
    And also hes out of work at min done them same job as a roofer for years he can't do it now he's 52 it's hard for him finding another job for how he is 
  • rachel3471
    rachel3471 Community member Posts: 39 Listener
    Not saying he has ASD, but if he has there's no pill to take that makes it all go away! As OverlyAnxious says, the biggest help is knowing so that you can SELF help, recognise unhelpful patterns, manage your life differently, recognise your behaviours and manage them, all of which you can do without a diagnosis. If you find out more about ADHD and ASD you might firstly be either more convinced he has them or decide to discount them on more information. And secondly you can look into symptoms and how to manage them. I used to have alot of outbursts but they were through stress, frustration, pressure from others and confusion. So I've learned when I feel 'ranty' to think about and analyse what's making me feel that way, then see what I can do to alleviate it. For me (because an overload of many stressors causes a meltdown) removing any one of the aggravating factors (maybe noise, heat, workload, another person) can bring things down to a manageable level. And it's certainly an absolute fact that other people contribute hugely to my 'rants' by (sometimes unwittingly) inflaming a situation, not helping, dealing with me in the wrong way or overloading me. They say that knowing someone with ASD makes you a better person because you learn to be more considerate! People find this concept rude and accusatory, but it's not their fault if they don't think like another person, anymore than it's MY fault I'm not neurotypical, and (however annoying I probably am sometimes!) people getting angry and fed up with me is the very worst thing they could do! I need reassurance, an offer of help, understanding - so I can work WITH other people on a solution rather than feeling the whole world's against me, because other people joining in the rant just makes me defensive and more ranty! So I do feel that you're probably in a position to help him more than the NHS right at this moment, it's just about understanding. It doesn't HAVE to be about a quick fix with medication and a tick in the box!
    I can't help him I've tried nothing I do or say he don't understand 
  • rachel3471
    rachel3471 Community member Posts: 39 Listener
    Its not just that hrs been on sick though dwp how do u explain 2 them how u are and what disability u have withoutproof

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