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Trouble getting diagnosed?

Sparle001

Hi all,

sorry if I use any terms in my message which aren't correct it isn't intentional 

i am hoping you may be able to help... My friend has a child aged 5, he is displaying signs of autism and has been referred to a specialist/consultant who advised she would not diagnose until he is 7 years of age.

my friend is at her wits end, she is recieving no help at the moment as Alfi hasn't been diagnosed. Alfie struggles to sleep, and is displaying challenging behaviours; trying to strangle his older brother/not wanting to leave the house/refusing to eat (To name a few)

have any of you had similar battles with getting your child diagnosed? And what did you do? I am thinking of paying for them to see a private consultant outside the county-have any of you done this? Or could recommend a specialist? 

Any help/tips would be very appreciated,

  • Thank you so much for your help, advice and signposting its been invaluable...you are wOnderful people taking time out to help others. Again thank you x

  • Dear Sparle001,

    You and your friend may find the following information on diagnosis helpful:

    http://www.autism.org.uk/About-autism/All-about-diagnosis/Diagnosis-the-process-for-children.aspx

    You or your friend may also like to call the Autism Helpline for more information on 0808 800 4104 (open 10am - 4pm, Mon - Fri). The number is free to call from landlines and most mobiles. 

    http://www.autism.org.uk/About-autism/All-about-diagnosis/Diagnosis-the-process-for-children.aspx

    Hope that's of some help.

    Adél (NAS moderator)

  • Government says it will do X but does Z, aspie goes Y !

  • @Sparle001: Writing down a list of traits/symptoms would be a good idea.  As would you advocating for your friend.

    With my children I wrote 20+ page reports apiece on their lives birth to date...but then I am an Aspie myself and we don't do things by halves. Money Mouth

    The idea with early diagnosis is meant to be for interventions to have the best possible chance.  Perhaps due to the lacking support in this country they aren't as bothered.

  • Hi - I wd do as the other posters have suggested.  It is ridiculous to have to wait until that age - many children get diagnosed before their 3rd birthday.  It is worth your friend considering whether or not she shd learn about autism whilst trying to get a diagnosis, if she is convinced he is autistic.  The process can take months so why wait for it to be official?  There's lots of info on the home pg + also on the posts.  Her son may be under a load of stress if he's started school + may be letting it out when he comes home.  If he is autistic then she needs to relate to him in that way + not as a parent of a non-autistic child wd related to their child.  Whilst the diagnosis is very important,opens the way for various kinds of support, inc help at school,  it is not an end in itself, if you see what I mean.  Can Alfie talk?  If not a pictoral timetable for each day + a set routine each day will help him.  Good luck with everything + check out the home page.Smile

  • I thought in any case the Government was promising to get diagnoses done earlier - like by the age of four (so they think) - so I think your GP is merely uninformed.

    My GP where I used to live refused to put up any information about autism in his surgery. He didn't believe in it apparently.

    Few GPs seem to have an adequate understanding. You need to press him for a diagnosis.

  • Thank you, I feel helpless and I am deeply concerned for her mental well being at the moment...

    ASD seems to be badly understood with "professionals" and lack of support...

    i will tell her your advice, I may go with her as she isn't great at advocating for herself. Would you recommend writing 'symptoms' down for assessment or is based purely on the assessment itself? 

  • Everyone is entitled to a 2nd opinion on the NHS according to NHS rules. Your friend should go back to the GP and ask for referral elsewhere. This probably would still only be classed as a 1st opinion anyway as no assessment was done. I have read of many parents saying their child received a diagnosis at 2-3 years of age so I don't know why this consultant is so dismissive about it. They maybe don't have expertise and are not confident until the child is older. Tell your friend not to give up and go back to the GP. Alternatively she could challenge the consultant and insist.