Adult autism- how to get diagnosis?

Hi,

I have 5 children 15, 13, 7, 5 and 3 and my oldest has been diagnosed as being within the ASD spectrum and in attendance at a SEN school,  with the second currently under Community Paedeatricians wwith a referral to CAMHS as its suspected she is on the spectrum as well.

My husband, (40), also displays a lot of the same behavioural traits and after being on anti depressants for over 4 years, we finally got a referral to the mental health team who basically have said, yes it could be your ASD but your old, we can't really say so easily, and discharged him. 

After such a long slog trying to get him some help, I am buckling under the pressure trying to cope with him, 5 kids and a degree course fulltime. Noone gets PIP, disability allowance, carers allowance or ESA - I would appreciate any advice on how to get his needs recognised and find some support. 

Thank you. 

Parents
  • Hi happispsirit, please excuse me for a moment whilst I carry out an essential task.

    Hi Longman

    Nil carborundum illegitimi

    CC

    So, back to the thread. An EQ test score of 42 is meaningless in itself, but is good information to contribute to the diagnostic process. I know someone with quite severe ASD who scores 17 on the test - the results depend very much on the honesty (with him/herself) of the person answering!

    With that, evidence from you and evidence from his Mum, you shpould at least be getting an appointment for a proper professional assessment, but unless he takes on board that there are serious issues to address, he isn't going to co-operate in the way that he needs to, and that's a great pity.

    Whilst none of us on here are qualified to give an opinion or a diagnosis, the fact that you are here and describing pretty much our experience and the way we behave, indicates to me that you're not wrong about him.

    Getting a diagnosis doesn't change the condition. Medication doesn't change the condition, and for my part, having spent a lifetime being given totally useless and innapropriate medications, I can say that doling out tranquilisers etc is an insult - it tells me that my doctor isn't listening or paying attention to the things I am unable to express, but am trying to. It is incredibly frustrating.

    Unless your husband can find the strength to consider his position, it will not change. You can lead a horse to water... The problem is that instead of saying to someone 'you might be a different sort of person', our society says 'poor you, you poor little disabled person who is outside of mainstream society' etc etc. This negative picture is, understandably, one that people shy away from. You'll typicaly hear 'there's nothing wrong with me, it's everyone else that's the problem' or some derivative of that.

    It takes a particular mindset to be able to say that one's life is all wrong, and to try to find out why. If you look at the moderator's message to Longman above, for instance, I see someone who thinks they 'get it' but doesn't have a clue what it means to 'be it'. And that's the real problem - we live in a world where people are incapable of understanding what it means to live as an AS person, just as we have no idea what it is to live as a non-AS person. If you want to understand someone's life, step into their shoes, as it were. NTs claim to have this ability, we, as is shown, do not. I know that I don't, so it's impossible for me to know whether non-AS people can. I wouldn't have thought that this would be a difficult fact to grasp.

    Your husband clearly has difficulties, if your reporting is accurate (I stress that I accept everything you say as true) but if he cannot accept our assurances that a formal, positive diagnosis WILL change his life for the better, there is no start point. He isn't disabled, he isn't a failure either as a man, husband or father, he is locked behind a typical barrier of male ego. Been there, done that, decided it wasn't working so opened my intelligent mind to other possibilities and now I'm here talking to you. It still took one other person to get through to me, and that was my caring, observant GP. I only listened to her because I believed that she cared, and after a lifetime of the opposite experience with the medics, that was a tough call on me.

    Strange and bewildering things happen to us. We are all, from time to time, ashamed and embarrassed by our own behaviour. It takes a lot to admit it, let alone talk about it, but when we do, we find out that it isn't just 'us'. If you can persuade your husband to come onto this website and talk about himself (and do remind him that we are anonymous so he is SAFE here) then perhaps we can help persuade him to take a new look at himself. But, no-one can help someone who won't help theirself, and that's the first hurdle.

    You sound like a good person, and I'm sorry that you are in this position, but I respect your determination and admire your courage. Astonishingly good luck to you - wonderful things DO happen.

Reply
  • Hi happispsirit, please excuse me for a moment whilst I carry out an essential task.

    Hi Longman

    Nil carborundum illegitimi

    CC

    So, back to the thread. An EQ test score of 42 is meaningless in itself, but is good information to contribute to the diagnostic process. I know someone with quite severe ASD who scores 17 on the test - the results depend very much on the honesty (with him/herself) of the person answering!

    With that, evidence from you and evidence from his Mum, you shpould at least be getting an appointment for a proper professional assessment, but unless he takes on board that there are serious issues to address, he isn't going to co-operate in the way that he needs to, and that's a great pity.

    Whilst none of us on here are qualified to give an opinion or a diagnosis, the fact that you are here and describing pretty much our experience and the way we behave, indicates to me that you're not wrong about him.

    Getting a diagnosis doesn't change the condition. Medication doesn't change the condition, and for my part, having spent a lifetime being given totally useless and innapropriate medications, I can say that doling out tranquilisers etc is an insult - it tells me that my doctor isn't listening or paying attention to the things I am unable to express, but am trying to. It is incredibly frustrating.

    Unless your husband can find the strength to consider his position, it will not change. You can lead a horse to water... The problem is that instead of saying to someone 'you might be a different sort of person', our society says 'poor you, you poor little disabled person who is outside of mainstream society' etc etc. This negative picture is, understandably, one that people shy away from. You'll typicaly hear 'there's nothing wrong with me, it's everyone else that's the problem' or some derivative of that.

    It takes a particular mindset to be able to say that one's life is all wrong, and to try to find out why. If you look at the moderator's message to Longman above, for instance, I see someone who thinks they 'get it' but doesn't have a clue what it means to 'be it'. And that's the real problem - we live in a world where people are incapable of understanding what it means to live as an AS person, just as we have no idea what it is to live as a non-AS person. If you want to understand someone's life, step into their shoes, as it were. NTs claim to have this ability, we, as is shown, do not. I know that I don't, so it's impossible for me to know whether non-AS people can. I wouldn't have thought that this would be a difficult fact to grasp.

    Your husband clearly has difficulties, if your reporting is accurate (I stress that I accept everything you say as true) but if he cannot accept our assurances that a formal, positive diagnosis WILL change his life for the better, there is no start point. He isn't disabled, he isn't a failure either as a man, husband or father, he is locked behind a typical barrier of male ego. Been there, done that, decided it wasn't working so opened my intelligent mind to other possibilities and now I'm here talking to you. It still took one other person to get through to me, and that was my caring, observant GP. I only listened to her because I believed that she cared, and after a lifetime of the opposite experience with the medics, that was a tough call on me.

    Strange and bewildering things happen to us. We are all, from time to time, ashamed and embarrassed by our own behaviour. It takes a lot to admit it, let alone talk about it, but when we do, we find out that it isn't just 'us'. If you can persuade your husband to come onto this website and talk about himself (and do remind him that we are anonymous so he is SAFE here) then perhaps we can help persuade him to take a new look at himself. But, no-one can help someone who won't help theirself, and that's the first hurdle.

    You sound like a good person, and I'm sorry that you are in this position, but I respect your determination and admire your courage. Astonishingly good luck to you - wonderful things DO happen.

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