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Need diagnosis for grand-daughter

Ann-marie Member Posts: 2
edited August 2016 in Autism and neurodiversity
Does anyone know where I can get my Grand-Daughter diagnosed quickly?
My son has learning difficulties and his wife is a little slow and very shy, they have a little girl Mia, aged 3½ years old. They asked the social services to help them in the beginning with things like parenting classes. But because of Mia's behaviour in school the social workers want her to go into care because of immature parenting. I am with them every day to help them with Mia's care and to have another person running around after her.
We have seen lots of professionals like speech and language, audiology, physiotherapy, occupational therapy, senco and educational psychologist all have said she is showing autistic traits, poor concentration and hyperactive. She has also seen a paediatrician who has done blood test for DNA and Chromosomes and EEG, no results yet. He also said she is showing autistic traits but will not say that she is autistic yet and doesn't want to see her again for another six months. This could be too late for this family.
These are some of the things that Mia does;
Makes noise for the sake of it
Listens to a boom box playing continuous rhythm
Doesn't like silence
Doesn't like loud noises
Will only talk to people with 1-2 word answers
Talks as a third person, things are not hers they are Mia's also its Mia's mum and Mia's dad
Holds up to three-way conversations with herself in her own world
Doesn't make eye contact
Have blank stares, non-responsive for about 5-10 minutes at a time about 3-4 times a day
Went floppy for 20 minutes after one blank episode
Doesn't like being touched, will turn away from people
Will not play with other children
Lashes out if touched by another child
Says things like "don't like her", "take me away"
Screams if you take something away from her
Will not sit near other children
Doesn't like large groups, screaming/crying during school assembly
Doesn't respond to emotions
Doesn't feel or show pain, usually saying "Ow" if hurt, then carrying on
Will not sit still for more then 5-10 minutes, unless doing something she wants to do
Continually on the move
Lines all her toys in lines, getting upset if you change position of anything in her line
Sorts things into colour, size and shape
Repeats things like movement
Has to get dressed in the same order every day
Will climb everything
Doesn't know danger
Will only eat certain foods that cannot be touching on a plate
Licks taste and smells everything
Panics when she has been away from home saying things like "home now", "take me away"
Clings to her special toy screaming out "stop the car" if she hasn't got it or if she has dropped it
Will not sit to watch TV, but will not allow TV to be switched off
Moves from 1 activities to another every 10 minutes
Has over flexible hips and poor tone in her legs
Has slight Talipes in both feet, falling over a lot
Any advice people can give would be very helpful


  • tsnfirestorm
    tsnfirestorm Member Posts: 2 Connected
    The only way you will get a diagnosis any faster is to go private. What you describe as blank stares & going floppy makes me consider epilepsy, which is apparently quite common in ASD kids. Has Mia been checked out for that? If you can't go private the only option is to be persistent, badger badger badger until you get the help you need. Good luck.
  • Heather
    Heather Member Posts: 168 Connected
    Sorry to hear of your worries. Unfortunately, the NHS is notoriously slow in diagnosing, penny pinching and putting off what is obviously some major issues. Mia's lucky having a loving Grand mother and no doubt her parents want to do what's right. A sad reflection of SS bull dozing in and not putting in appropriate support. If private diagnoses is not possible I would seek support from your local MP, go to their clinic and meet them face to face and tell them you need help. We found our mp extremely supportive and hopefully you will too. Good luck x
  • Ann-marie
    Ann-marie Member Posts: 2
    edited May 2014
    Thank you or the advice. I can't afford to go private,so I think it will have to be the lol MP
  • tsnfirestorm
    tsnfirestorm Member Posts: 2 Connected
    Yes, write to your MP. Very happy to proof read what you are going to send if you like. :)
  • Naomi
    Naomi Member Posts: 29 Listener
    Yes, agree with the MP route, hopefully they will be supportive. But the NHS can be very slow, and the come back in six months is common, although to be fair when my second special needs child was diagnosed with a very serious condition she was rushed through the system. Make sure you continue to keep a record of behaviours and attend as many of the appointments as possible, making it clear that you have a very active role in the child's care. Good luck.
  • ajchm
    ajchm Member Posts: 7 Connected
    Sounds like my dd at that age, the difference was we are university educated, other half title is doctor (not medical but goes a long way with health professionals) so our parenting wasn't called into question, she was diagnosed at 3 with autism, dyspraxia and partial seizures. It took fighting though, we first knew things weren't right at 2. Because psychological and neurological conditions are similar in symptoms at a young age, this could be the doctors thinking, and if both parents gave their own issues, a genetic cause is possible (sounds like they have run a lot of tests. You could go to gp and ask to be referred to camhs who would make an autism diagnosis, but its never that quick. What you do need to think about is, can they cope with their child, what options are there for support locally? In a way, diagnosis doesn't matter, its support required, but being open with her social worker about what you can offer to support the parents is another angle.
  • Natasha Brown
    Natasha Brown Member Posts: 108 Courageous
    It sounds like they need support and a proper diagnosis.
    You are helping them and clearly a child s difficulties may bear no relation to the parenting ie doing everything you can won't change an underlying diagnosis. Do you feel they can care for her adequately with your support ? Take her to all appointments etc ?

    You should speak to a specialist solicitor about perhaps becoming special guardian for the child so you have equal parental rights parental responsibility as the parents. Thereby ensuring your legal status beyond that of grandparent so she doesn't get taken into care. If that is what you want.

    Speak to

    Have nursery started process of assessment for education health and care plan ?

    What in home support are they getting eg portage alongside nursery ? Any nas schemes locally ? Push for earlier appt with paed for review with view to diagnosis. The ADOS assessment could be done now and will give a score for ASD . aSD diagnosis can open doors.... But also if chance of seizures this needs to be checked out.


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