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Compulsory Relatives Questionnaire for Adult Autism diagnosis

Ted

Does anyone know if a relative questionnaire (RQ form) is compulsory for autism diagnosis, or have successfully navigated a diagnosis without it?

I recently self-referred to Tower Hamlets Autism Service (East London NHS Foundation Trust) and although their response was rapid they insisted I have a parent complete ‘The Relatives Questionnaire’ form in order to be processed. I was given 3 forms; 'The Cambridge behaviour scale' / 'The AQ' / ‘The Relatives Questionnaire' the first two I completed in full. For various reasons I was reluctant the 'out myself' beyond the recognised doctor-patient confidentiality so declined to give the diagnosis team the RQ form and going as far as stating I saw it as a breach of my fundamental "human right to privacy" (Human Rights Act article 8). I subsequently received the below email closing my application for diagnosis without any further discussion and discharging me into my GP's care despite my self-referral. 

I'm considering contacting my GP to request a second opinion referral to an alternative autism service who don't insist on compulsory RQ form. But it would be great to know if this is a universal requirement or if others have received a diagnosis without it?

I know it's not hard evidence but the 2018 "Are You Autistic?" programme on Channel 4 filmed two people getting diagnosis both of whom got it in person with no seeming need for a relatives input.

//

Your re-referral for an autism assessment by THAS was discussed at our team meeting yesterday.
Of concern is the lack of any developmental information and your reluctance to involve your family or partner in your assessment. 
The THAS team are of the view that without any developmental history information from your family, school or medical reports from your childhood, or collateral information from your partner, the results of any autism assessment will be inconclusive.  We have therefore taken the decision to not progress any further with your referral and we will discharge you from THAS to the care of your GP.
If in the future, if you are willing to provide some developmental information or collateral information then we would reconsider a re-referral.
You will receive a discharge letter by post which will be copied to your GP.
//

  • Sit down and write about your childhood.  Anything and everything you can think of.  Write it all down.  How school was for you, did you have any issues at school, did you have any issues in childhood.  Anything and everything from the first memory you have until present day.  All the difficulties you have.  things you are good at, things you are bad at.  This can be used as evidence.

    Having a parent or relative take part in the process isn't needed.  I explained for my assessment that my parents refused to take part in it because they didn't believe I was autistic and that I just needed to stop making excuses.  It went ahead with me discussing my childhood.

    So tell them your parents/relatives refuse to take part because they dont think autism exists.  Or something similar.  Also appeal their decision.

  • Mine could have been done without parental information, but anything from someone who knew you as a child could be useful.

    My mum didn’t remember much, and she simply wrote some notes on paper, which I copied and emailed to my psychologist. I don’t know if it was relevant or not. 
    I also sent in stuff written by my children, 26 and 17, my youngest sister, and my ex partner of 2 1/2 years.

    I wrote a lot about my childhood that I remembered. The more I thought, the more that cropped up. 
    I haven’t had my results yet.

  • People often say this or that is a breach of my human rights and it's largely hyperbole, at least in terms of rights in law. But ironically this is one situation where article 8 will apply. The NHS is a government body, It must respect your article 8 rights. Not having to divulge a medical condition to your family is very likely to fall under article 8.

    However your article 8 right is not absolute. It can be set aside if it is lawful, necessary and proportionate in order to:

    • protect national security
    • protect public safety
    • protect the economy
    • protect health or morals
    • prevent disorder or crime, or
    • protect the rights and freedoms of other people.

    The only one of these I could possibly see applying is "protecting health." Namely your health if it could lead to you being given the wrong diagnosis. You might be able to hire an expert to testify in court that this isn't the case, as you say other people do get diagnosed with out parental input. However that expert would easily be able to do your diagnosis anyway so unless someone else is paying for it you might as well get a private diagnosis.

    If you're really determined to pursue the human rights angle you could check if you qualify for legal aid. With legal aid you could get a lawyer to tell you if you really have a case, it might even pay for an expert too. But it would probably be far faster to just re apply and ask if someone who's known you for a long while could speak to them instead of your parents. The legal system is not quick.

  • I didn’t have anyone to complete the RQ form and didn’t provide any school reports etc for my initial assessment and they agreed to continue without it. When it came to the final part of the process and they needed to speak to someone who knew me, my private therapist talked to them as I’d been seeing him for some time and that was fine. No one in my family knew anything about the process or were involved in any way so it is possible to be assessed without it. I’m not sure if it would have been if there wasn’t anyone who knew me well in some capacity though who was prepared to talk to them.

  • Whilst it is always far easier for an assessment to be done where developmental information is available from a parent or someone else who knows you well or knew you well as a child, an assessment CAN be done without.  They would talk to you about your childhood, as Martin points out, alongside an assessment of how you present now.

    Moreover lots of people are assessed without the input of other either because they no longer have living relatives who can provide this information or because, like you, this would be uncomfortable - not everyone wants their family to know their business and for some people, if relationships are abusive or fragile, that could actually be dangerous.  I hesitated about involving my mother.  I really don't think that is a good enough reason not to proceed, albeit they may have to spend more time directly with you.

    You could try and think about any evidence you may have from childhood or your teens which might help compensate.  I had old diaries and school reports etc.  Any video?

    But, I certainly would go back to my GP with that.

  • I think that diagnosis requires evidence from early childhood. However, that could be from the person being assessed, it is hardly reasonable that the parents of people in their 50s and 60s should be available to complete forms.

    The unilateral reaction seems unreasonable to me, certainly as they do not address your right to privacy at all. Having said that, I think that you may well find similar reactions from other assessment providers. My wife completed a questionnaire for my assessment. If you are committed to getting a diagnosis you may have to address the issues that are preventing you revealing your situation to the people who could support your evidence of possessing autistic traits.