Referred for autism assessment (England)- what to expect?

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mournerx
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16 Mar 2016, 2:06 pm

Hello. This is my first post, although I have been lurking for months. I am lookin for information specific to UK, please redirect me if this has been covered elsewhere.

As there are no diagnostic provisions in my area, my GP practice have secured some funding for my dx assessment. I will be seen at a specialist facility, which is private.

What can I expect? Does anyone have experience of adult dx in the UK?

I assume they will use AAA, ADOS and ADI-R. Do you have any experience with these methods?

I am very anxious as I am trying to prepare myself emotionally but the GP has been very vague about it and I have not received any communication from the place. Also I was assured I don't have to bring any relatives (I am estranged from my parents) but I am worried the GP made a mistake and when I arrive for my assessment they will expect a relative to be present.

Thank you..


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Trogluddite
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16 Mar 2016, 2:49 pm

Welcome Mournerx,

From talking to other UK residents here and elsewhere, it seems that the evaluation process is rather variable depending on the particular unit that conduct it.

However, the most typical evaluations that I've heard of, and what I underwent, involve both a session conducting one or more of the standard self-reporting diagnostic tools, followed by several 1 or 2 hour interviews with a psychologist and/or occupational therapist.

Family involvement is usually preferred, but it is certainly not essential - many people are unable to include family, whether due to bereavement or estrangement. The evaluation might be extended or include an addition clinician in that case, to allow a similar level of certainty in the final diagnosis.

Most people seem to find that the process of getting a referral from their GP in the first place is actually more stressful than the evaluation. Once you reach that stage, you are dealing with people for whom autism is a speciality - they will be used to the common anxieties that patients have about the process (for example, "what if I'm an impostor?" is a very common one that is usually laid to rest very quickly).

Lastly, remember that under NHS guidelines, every patient is entitled to a second opinion if they are not satisfied with how their evaluation was conducted.

Best wishes.


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mournerx
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16 Mar 2016, 3:21 pm

Trogluddite wrote:
Welcome Mournerx,

From talking to other UK residents here and elsewhere, it seems that the evaluation process is rather variable depending on the particular unit that conduct it.

However, the most typical evaluations that I've heard of, and what I underwent, involve both a session conducting one or more of the standard self-reporting diagnostic tools, followed by several 1 or 2 hour interviews with a psychologist and/or occupational therapist.

Family involvement is usually preferred, but it is certainly not essential - many people are unable to include family, whether due to bereavement or estrangement. The evaluation might be extended or include an addition clinician in that case, to allow a similar level of certainty in the final diagnosis.

Most people seem to find that the process of getting a referral from their GP in the first place is actually more stressful than the evaluation. Once you reach that stage, you are dealing with people for whom autism is a speciality - they will be used to the common anxieties that patients have about the process (for example, "what if I'm an impostor?" is a very common one that is usually laid to rest very quickly).

Lastly, remember that under NHS guidelines, every patient is entitled to a second opinion if they are not satisfied with how their evaluation was conducted.

Best wishes.


Thank you so much, that's really helpful. The impostor anxiety is definitely something I'm dealing with rn. Even posting on this forum was kind of a big deal.

Getting the GP referral was not as difficult for me, perhaps because of how much I am currently struggling.


_________________
personal autism blog.

twitter @zettelstelle

Dxed with Autistic Spectrum Disorder 16/04/2016

Formal diagnosis is for access to services, not to validate me as Autistic. Self-diagnosis is valid.


TheAvenger161173
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17 Mar 2016, 12:23 pm

mournerx wrote:
Trogluddite wrote:
Welcome Mournerx,

From talking to other UK residents here and elsewhere, it seems that the evaluation process is rather variable depending on the particular unit that conduct it.

However, the most typical evaluations that I've heard of, and what I underwent, involve both a session conducting one or more of the standard self-reporting diagnostic tools, followed by several 1 or 2 hour interviews with a psychologist and/or occupational therapist.

Family involvement is usually preferred, but it is certainly not essential - many people are unable to include family, whether due to bereavement or estrangement. The evaluation might be extended or include an addition clinician in that case, to allow a similar level of certainty in the final diagnosis.

Most people seem to find that the process of getting a referral from their GP in the first place is actually more stressful than the evaluation. Once you reach that stage, you are dealing with people for whom autism is a speciality - they will be used to the common anxieties that patients have about the process (for example, "what if I'm an impostor?" is a very common one that is usually laid to rest very quickly).

Lastly, remember that under NHS guidelines, every patient is entitled to a second opinion if they are not satisfied with how their evaluation was conducted.

Best wishes.


Thank you so much, that's really helpful. The impostor anxiety is definitely something I'm dealing with rn. Even posting on this forum was kind of a big deal.

Getting the GP referral was not as difficult for me, perhaps because of how much I am currently struggling.
Do you mean you are in denial a touch with the anxiety?



Trogluddite
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17 Mar 2016, 1:31 pm

I'm not sure that 'impostor anxiety' is necessarily about denial. I went into my assessment simply wanting some clear answers - I wasn't looking to have a pre-conceived idea confirmed or rejected.

I do think it's common though, that undiagnosed people can easily fall into the trap of trying to view their traits from the viewpoint of the people around them - that if our externally observable behaviour doesn't cause too many problems, then we might not be not autistic. Unlike those observable traits, we have no "base-line" of behaviour by which to measure the internal ones that we only experience in private - which can lead to doubts.

For example:- How much procrastination is "normal"? How can one separate fanatical enthusiasm for a hobby from what is an autistic special interest? How does one tell stimming apart from a simple 'tic'? None of those questions necessarily imply that we are frightened to be diagnosed as autistic, or are wishing for a negative diagnosis - just that we're uncertain if we are looking for the answers in the right place, and are in need of some reassurance.


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