Hi everyone

Hi all im mum to four children and have recieved news this week that is looking highly likely we will be soon recieiving a diagnosis of autism.

My little adopted daughter is 8 and since being a baby things have been difficult, I have been asking for help since she was 3 and when she was almost 6 we got referral to camhs, shes also seen a paediatrician, genetecist, educational psychologist and occupational therapist.

She has been assessed for foetal alcohol spectrum disorder which they havent been able to rule out and dont feel at the moment its appropriate to diagnose her birth mum did drink and take drugs during pregnancy.

Shes always been quite particular, stubborn and things have to be just right, she has a huge difficulty with clothes and things feeling right, her hair has to be done specific, always a pony tail and always in the exact spot touching her head right, her clothes are limited, after being assessed by occupational therapy she has sensory processing disorder struggling with vestibular, proprioceptive, tactile, auditory and visual processing.

In school shes about 12-18 months behind maybe a little more in her reading, she is on school action although as she has outside agencies involved camhs and OT im thinking it should be school action plus but not sure. Her OT has requested shes assessed for dyslexia, her IQ testing showed she has a borderline IQ of 84/85

In March she had the ados assessment followed by them going in to school to observe her, the school observation showed she was needy of adult attention and rarely managed more than a few minutes without needing the interaction or support however her friendship wasnt age appropriate and she often isolated herself, her expression was mostly blank and she only smiled once during her assessment. Her ados test came back with a score of 12 however as she also has attachment difficulties they are still assessing to ensure they make the right diagnosis. She does have many autistic behaviours as well as many that are attachment so we are awaiting an appointment for assessment from the attachment disorders team.

Does anyone know if the ados test would have scored like that for attachment or is that purely autistic behaviours?

Her camhs doctor said she likes to be thorough and 100% sure before giving out a diagnosis and although shes currently 90% certain she has autism and attachment she just wants a little longer to make that 100% which i am in agreement with. She said they also want to assess her for adhd after observing in school.

Just wondering if anyone else has gone through similar, I fully agree she has attachment difficulties and agree that she has many autistic behaviours as well but would be great to hear from other people in a similar situation.

Parents
  • Hi littlemiss06,

     An experience many like yourself know only too well. If a child is overtly disruptive in the class they often leave those who are quieter or who have less obvious needs, overlooked.

    Both my boys were high functioning and I was fobbed off by the Headtecher at their Primary School continually. This was despite the fact that both were very severly dyslexic and had ASD.  It's not for a Head to tell you who is 'more worthy,' your child has needs, which it sounds like, are not being met.

    Personally, I'd put in a request to the SENCO for your child to have a Statutory Assessment under section 323 of the Education act, with a view to a statement. Do so in writing as soon as you can. I'd contact IPSEA (Free) in the first instance to find out if a request and the tiime frames left (As we are now in May) will be sufficient to get the ball rolling in time for the September changes.

    http://www.ipsea.org.uk/

    A request to assess, supported by the School will get the process moving more quickly. If your daughters School does not support your request you can still apply to the LA without the Schools support, but you may be refused by the LA as the child is still at School Action. LA's often refuse assessment using the reason that 'insufficient time has been given at a certain level to prove that the child has not improved sufficiently.' In this event you would need to go to tribunal to appeal that decision.

    Be prepared for your School to be reluctant to help, as the process requires submission on their part, of intervention already given. Keeping a child at SA when they clearly have quite complex needs is not really acceptable.

    The attached link may be of help to you. It shows what the schools etc should be doing, 

    webarchive.nationalarchives.gov.uk/.../dfes 0581 200mig2228.pdf

    Because you have most of the outside agency assessments already in hand, it seems likely (depending on your Local Authority) that you have a strong case for statemented support. All I can say is that the earlier your child gets targeted support the better the outcome in my experience.

    I hope the above is not too much for you to take in and does not alarm you. However, I see many paralells to my own experiences here and i wished i'd acted sooner.

    Please feel free to contact me if i can be of any further help, but in all matters legal i'd get IPSEA to help you in the first intance.

    Regards 

    Coogybear

Reply
  • Hi littlemiss06,

     An experience many like yourself know only too well. If a child is overtly disruptive in the class they often leave those who are quieter or who have less obvious needs, overlooked.

    Both my boys were high functioning and I was fobbed off by the Headtecher at their Primary School continually. This was despite the fact that both were very severly dyslexic and had ASD.  It's not for a Head to tell you who is 'more worthy,' your child has needs, which it sounds like, are not being met.

    Personally, I'd put in a request to the SENCO for your child to have a Statutory Assessment under section 323 of the Education act, with a view to a statement. Do so in writing as soon as you can. I'd contact IPSEA (Free) in the first instance to find out if a request and the tiime frames left (As we are now in May) will be sufficient to get the ball rolling in time for the September changes.

    http://www.ipsea.org.uk/

    A request to assess, supported by the School will get the process moving more quickly. If your daughters School does not support your request you can still apply to the LA without the Schools support, but you may be refused by the LA as the child is still at School Action. LA's often refuse assessment using the reason that 'insufficient time has been given at a certain level to prove that the child has not improved sufficiently.' In this event you would need to go to tribunal to appeal that decision.

    Be prepared for your School to be reluctant to help, as the process requires submission on their part, of intervention already given. Keeping a child at SA when they clearly have quite complex needs is not really acceptable.

    The attached link may be of help to you. It shows what the schools etc should be doing, 

    webarchive.nationalarchives.gov.uk/.../dfes 0581 200mig2228.pdf

    Because you have most of the outside agency assessments already in hand, it seems likely (depending on your Local Authority) that you have a strong case for statemented support. All I can say is that the earlier your child gets targeted support the better the outcome in my experience.

    I hope the above is not too much for you to take in and does not alarm you. However, I see many paralells to my own experiences here and i wished i'd acted sooner.

    Please feel free to contact me if i can be of any further help, but in all matters legal i'd get IPSEA to help you in the first intance.

    Regards 

    Coogybear

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