Diagnosis

The pathways

  • Here is a guide offers several pages that take you through the journey to diagnosis.Ambitious - Wendy        It includes a couple of video clips from autism mums.               The picture is of Wendy.
  • The basis for deciding whether someone is autistic was revised in 2013.          It can be found in a large document known as DSM-5, for short.           Here is an easy-reading summary of The changes made.
  • Social development history assessment is a bit of a mouthful.              What is it?
  • The National Institute for Health and Clinical Excellence (NICE) guidelines set out the way things should work in England.               The guidlines link above covers recognising, referring and diagnosing autism in children and young people from birth to 19 years of age.          NICE–also produce pathways in the form of diagrams.          The diagram link shows the kind of thing you might mention to your GP when asking for a referral.                  (new)
  • Once you have a diagnosis you might still have questions.             See Confused about diagnosis.

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News

Lincoln support group PAACT has published a letter, dated August 2017, about diagnosing in Lincolnshire.           It mentions an audit of the process and pathway.           It also touches on referral by a doctor or school.

A diagnostic mystery

This article starts with Jayne.              She is described as having severe and sustained impairment in social interaction, but without the clinically
significant delay in language acquisition characteristic of autism; also distinctive is the presence of restrictive, highly idiosyncratic interests.
               The
article goes on to discuss diagnostic criteria for Asperger’s syndrome.

Coming to terms with it

Many people find it difficult to come to terms with the possibility or reality of an autism spectrum diagnosis somewhere along the line.

  • This discussion  is about a husband who does not want to talk.                A GP referral is recommended.
  • Another discussion  mentions a husband with changeable attitudes .                 The wife thinks he will not accept it even with diagnosis.
    It is about a 6 year old boy who was excluded from school.
  • Discussion  “… why are we paying someone £60 a week to come in and play with our son?        We should not need someone to show us how to be parents.”
  • Discussion  “My husband wouldn’t see anything “wrong” with our youngest …”.              “He swings from starting to accept it, back to denial again.”
    “That’s a really sexist generalisation that I need to take issue with.”
  • Discussion  “I think denial is definitely one of the stages we all go through but we soon come to realise that acceptance is needed to move on.” “It might not look ‘the same’ as others on the surface, but our inner world and our talents and skills can be very useful indeed once we’re past the tricky childhood years.”
  • Discussion  “Let’s just say that I have spent five years in denial – passing off and ignoring things that are actually REALLY obvious to me looking
    back …”.  
                  
    One Reply concludes, “The truth is, I did see it, but I wasn’t ready to accept it”.
  • Discussion  recommends that a grandmother offers general encouragement and is there for her daughter.              Thank goodness for
    supportive grandparents

Borderline Asperger’s

When a child has a relatively subtle version of Asperger’s Syndrome it is more difficult to spot the signs – for parents and professionals alike.              This generally means that diagnosis is delayed but it may be worth while taking some time to read the posts and replies in the following.

  • A possible sibling diagnosis discussion.              The mother says, However, they don’t want to start the ASD diagnostic process because she’s only 3 and has no language delay.”               A couple of replies go along the lines that, “I think the bottom line is that the label isn’t what’s important is
    spotting where help and support is needed and giving it.”
  • Here is a discussion about a 19 year-old.               His mother says, “We were alerted by staff at the school around this time that he was finding it difficult to interact socially with his peers and the PE teacher mentioned the word ‘Asperger’s Syndrome’ which my husband and I had never heard
    before”.              
    One reply says, “… I wanted to share this with you, so as to point out that one should not give up hope of things improving.      I had a very rough time mentally in my late teens too”.              Not all cases are as difficult as this one, though.
  • This page includes an article about a 5 year-old boy who is considered to be borderline autistic.              His mum says, “We have not had Michael formally diagnosed autistic, because (a) my husband is against ‘labeling’, and (b) because I believe Michael is coping adequately in a mainstream situation”.

The voice of experience

Getting a diagnosis of autism often seems to be difficult.          Professionals may try to fob you off to begin with suggesting that things might sort themselves out – perhaps partly because they do not see your child at home.          Parents often find waiting lists frustrating.           Here is a small selection of cases on the internet.           There is much more to read once you click on the links.              See also:  More tips.

  • Detailed account    “… talk to as many other parents in a similar position as you can.”
  • Discussion prompted by the mother of a 14 year old.       “It is so much more difficult to get people to listen when your child is older.”
    “… his school refused to recognise that his difficulties were autistic traits and completely denied to the professionals that there was a problem …”.
  • Discussion prompted by the mother of a 2½ year old.     “We have been working really hard and accessing any help we can which as I’m sure you all know can be difficult with no definite diagnosis.      She is currently having speech therapy and on the Early Years programme.”
    In terms of improving your daughters
    speech, things we did with our son that worked were play turn taking games like throwing a ball, pushing a car back  & forth, putting toys out of his reach …”.            “I have to say though that while on the waiting list we received ongoing support from the
    local Child Psychology Clinic …”.
  • Discussion overwhelmed mother of a 30 month old. Nursery seems supportive.      “… I think I’ll ask questions a step at a time as not to
    overwhelm myself … really trying to put things into perspective.”           “… you probably are helping him already and you don’t realise it.”         
    This discussion continues over several pages.
  • Discussion after GP referral to paediatrician.    “Your assessment will probably entail reports by different therapists such as Speech and Language, Occupational, Educational Psychology, school staff and anyone else who input with your daughter.”           “I would ring every week and ask the
    secretary of the paediatrician which referrals have been sent and when …”.          
    “Hi, Our experience is that it took a long time to get that first
    appointment with community paediatrician, but then things moved a bit faster.”
  • Discussion about preparing for assessment.       “ … I was asked about my pregnancy, delivery and his development milestones, what concerns I had about him and also any relevant family history.”           “The best thing to do is probably to write down as much as you can think of, both
    concerns you have and any questions you might want to ask them.”
  • Discussion of school’s role in diagnosis.     “And PALS previously told me that the NHS does accept private diagnosis.”            Not a lot of people know that, so parents may want to do a little research.              See   NHS        guidance

News item: late diagnosis is failing children on the spectrum.             (April 2016)

Key words

Pervasive Developmental Disorder (Not Otherwise Specified)            description

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GAIN logo - thumbnail Please be aware that we, at GAIN, are not qualified to give advice.                     See: disclaimer.

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