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Trying to get a diagnosis is proving difficult :( HELP

fairybellsxo
over 5 years ago

Hiya guys, im Rose. Im new to all of this so, I thought id ask for your advice.

So I've been considering Aspergers for a few years now. when I was younger I struggled immensely with change, of all type's, furniture being moved in the house! my mum's hairstyle, new year's in school! the transition from being a child to a teen, ( lost my appetite due to the fear of unexpected change ) and into my adult life ive faced difficulty with work, friendships, managers not approving of me, or finding me ' different ' or difficult, and losing multiple jobs. Thankfully my workplace currently accepts people for all their wonderful differences.

Anyway! the point is I've been seeking a diagnosis. I took the first step in visiting a doctor, ( my doctors has a separate out of hours facility that operates on a different site completely )  and told him all of my symptoms why I think I may have Aspergers, poured out my entire heart and soul! and went into great depth ( its what im best at ) and he said he'd send me to a mental health wellbeing center as he couldn't diagnose. I politely advised I had already seen them and there was nothing they could do to help and had told me to seek advice from a doctor, to which he tore the paper in half that he was about to hand me and put into the bin ( I'm quite sensitive so this didn't help ) he then said he would send my notes to my doctor so that they could refer me to an assessment center.

My local doctor called me and said because of the lack of note's the doctor left, they can't accept the referral :( I AM SO disappointed and disheartened, this means I need to see another doctor for the same reason on Christmas eve, and I'm just not getting a great feeling of care, and I'm also worrying he didn't think i was ' genuine ' enough, all these thoughts are getting me down and I want to get this addressed sooner. My doctor has explicitly told me he asked for a referral, but he's not asked the specific or required questions so they would need to see me again.

Does anybody have any advice? Or any opinions that could help I am so disappointed and upset, and know what steps I need to take to perhaps complaining about this type of treatment, I just don't feel that being told how the doctor has gone wrong, and then expecting me to wait a further month, seems fair :( And Like I haven't been taken seriously

I'm also sorry the first impression of me isn't fab! I'm working on it, its just not an amazing outcome so far, I was feeling so positive about making the steps and I feel ive been knocked back 400000 steps.

  • over 5 years ago in reply to ) (

    Sorry about your experience.  Unfortunately I don't think it's that unusual.  The problem is, like a lot things in life, you basically need to know exactly what you want in order to get what you need.  You can find the NICE clinical guidance for adult autism at:

    https://www.nice.org.uk/guidance/cg142

    The identification and assessment criteria are linked off that page at:

    https://www.nice.org.uk/guidance/CG142/chapter/1-Guidance#identification-and-assessment

    I'll cut and paste them at the bottom. 

    I'd suggest completing the AQ50:

    • Autism Spectrum Quotient (AQ)

    and the EQ60:

    • Empathy Quotient (EQ) for Adults

    You can download those tests and the scoring keys for them from:

    https://www.autismresearchcentre.com/arc_tests

    Assuming your AQ and EQ scores suggest an Autism diagnosis might be reasonable, then I'd suggest putting together up to a couple of sides of A4 going over your life history and how you think events in your life mean you meet the NICE criteria for Identification and initial assessment of possible autism.  Then when you go and see the doctor, take your completed AQ50 and EQ60, and a copy of the scoring keys for both of them, plus a copy of the NICE "Identification and initial assessment of possible autism" criteria and your one page of A4 that tries to demonstrate how you think you meet the identification criteria.

    Having prepared the material up-front, then the meeting should be a lot less stressful because you basically say:

    • I think based on the difficulties I've had in life I may meet the NICE criteria for a possible autism diagnosis.
    • The results from the two screening tests I've done suggest I may be impacted by autism.
    • Based on this information, do you think a referral for an adult autism diagnosis might be appropriate, or if not, could you explain why you think this isn't appropriate?

    But you should find, if you have a reasonable case, that the doctor will agree with your thoughts and agree that a referral is appropriate.

    Identification and initial assessment of possible autism

    1.2.2Consider assessment for possible autism when a person has:

    • one or more of the following:

      • persistent difficulties in social interaction

      • persistent difficulties in social communication

      • stereotypic (rigid and repetitive) behaviours, resistance to change or restricted interests, and

    • one or more of the following:

      • problems in obtaining or sustaining employment or education

      • difficulties in initiating or sustaining social relationships

      • previous or current contact with mental health or learning disability services

      • a history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder) or mental disorder.

    1.2.3For adults with possible autism who do not have a moderate or severe learning disability, consider using the Autism-Spectrum Quotient – 10 items (AQ-10)[5]. (If a person has reading difficulties, read out the AQ-10.) If a person scores above six on the AQ-10, or autism is suspected based on clinical judgement (taking into account any past history provided by an informant), offer a comprehensive assessment for autism.

    1.2.4For adults with possible autism who have a moderate or severe learning disability, consider a brief assessment to ascertain whether the following behaviours are present (if necessary using information from a family member, partner or carer):

    • difficulties in reciprocal social interaction including:

      • limited interaction with others (for example, being aloof, indifferent or unusual)

      • interaction to fulfil needs only

      • interaction that is naive or one-sided

    • lack of responsiveness to others

    • little or no change in behaviour in response to different social situations

    • limited social demonstration of empathy

    • rigid routines and resistance to change

    • marked repetitive activities (for example, rocking and hand or finger flapping), especially when under stress or expressing emotion. 

      If two or more of the above categories of behaviour are present, offer a comprehensive assessment for autism.

  • over 5 years ago

    Hi rose and welcome aboard.

    You will find there is a great deal of caring people in here, they will advise you the best they can

    There doesn’t seem to be many online tonight though.

    The way you were treated is very wrong indeed, 

    I am not good at posting up information or helpful links but I am sure others will read your words and give advice.

    There a great bunch of people.

    Don’t worry about your first post, you won’t be judged on here, we have all suffered in one way or another. Rant if you feel like it, it helps.

    Sorry there aren’t many on tonight but I know they will try to help. We are all autistic by the way, we help when we can, we care a great deal.

    Take care,,,