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Hello, help please!

Grandma Diane

Hi,

I'm grandma to a 13 year old who is displaying symptoms of mild autism or possibly Aspergers, or possibly ADHD. Even some strangers he comes into contact with are picking up on the fact something is wrong with him including one lady who has worked with kids like him. 

His mum and I have been trying to get a diagnosis so we can get some help for him but feel we are banging our heads against a brick wall.  We went to his GP who has had very little contact with him so doesn't really know him over a year ago to try get him referred to a paediatrician. It has taken over a year to get a reply from the paediatric department who have said they do not feel it is appropriate for him to be seen by them and to have a word with the SENCO teacher at school.  We took a copy of the reply into school and asked for an appointment to see her at the begining of the week but so far have not recieved an appointment or any contact from the school.

Please can anyone here point us in the right direction of what to do and who else we can contact before  hurts himself, someone else or gets himself into trouble of some sort.

  • Dear Grandma Diane,

    I am a mum of a child with ASD (diagnosed) so I know how frustrated you must be.

    I am a nursery nurse so the knowledge of child's development 

     was very helpful in term of providing evidence.

    Start doing your own record of child's behaviour. You need at least 4 consecutive days of observations in a usual family setting. If what you say is true then the observations will confirm this and you can give it to the GP, school etc (write as you go, use a voice recorder or a camera and then rewrite on a PC as it will be a long read). Furthermore, it will be helpful to get EHCP and disability living allowance in place when/ if diagnosis will be made.

    Inform social services - call a helpline and explain that you are struggling and that you are worried about child's well-being. Councils have a duty of care under children's act if that makes sense. They will advise you how to get the assessment done. Who needs to do it and the possible time frame. (Common assessment framework - "CAFs" are forms and protocols which are done when a family needs a support) 

    Call Contact a family, it is a charity for families with disabled children. Free number 0808 808 3555

    On the internet visit your local council website. There should be a section for families and how to get help if you have any concerns regarding child's wellbeing.

    Hope this helps,

    Regards,

    amplissima

  • Hello Grandma Diane,

    So sorry to hear that you are struggling to get an assessment for you grandson.  The following information may of some assistance:

    There are two routes to gaining a diagnostic assessment. You can either go through the NHS where you will need a referral from your GP to see a diagnostician (e.g. a paediatrician, clinical psychologist, psychiatrist with experience of the condition) or pay to go privately where you may not always need a referral. The cost of a private diagnosis can vary. We have heard cases of some local authorities not recognising a private diagnosis and for this reason some people opt to also stay within the NHS system.

     

    Please see the following link below for further information on getting a diagnosis:

    http://www.autism.org.uk/about-autism/all-about-diagnosis.aspx

     

    If you choose to go through the NHS, you will need to talk to the GP about some of the characteristics and behaviours that make you suspect your child has the condition.  It is very important that your child is referred to a diagnostician with experience in the field of autism spectrum disorders. Details of diagnostic services can be found on our directory www.autism.org.uk/directory.

     

    It may help to pass on information specifically for health professionals when seeking a diagnosis:

    http://www.autism.org.uk/Working-with/Health.aspx

     

    The main things parents should be expecting/asking for during assessment are those outlined in the National Autism Plan for Children. Please scroll down to page 3 on summary report, page 11 for full report for the Essential Components for a complete multi agency assessment. You can download the report at the bottom here: http://www.autism.org.uk/about/diagnosis/children.aspx##NAPC

     


    You may also find it useful to familiarise yourself with the NICE (National Institute for Health and Clinical Excellence) guidelines that focus on improving recognition, referral and diagnosis of children and young people with autism in England and Wales, and will bring about a far more consistent approach to referral and diagnosis, and mean more children get quicker access to necessary support services.  These best practice guidelines are useful to show you what you should be expecting from an NHS diagnostic service:  http://www.nice.org.uk/cg128



    If you need any further information or advice the team who are best equipped to answer your questions would be our Autism Helpline, as they can provide you with information and advice on your issue. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm), although please note that the Helpline is experiencing increasingly high demand, and you may not reach them straight away.

    Please see the following link for further information: http://www.autism.org.uk/services/helplines/main.aspx

    I hope that helps.

    Regards,

    Kerri-Mod

     

     

  • Hi Grandma Diane,


    Have you tried being referred to CAMHS ? Go to your GP and ask to be referred or if you are really desperate it might be worth thinking of taking him to Casulty and tell them your fears to his health, worries he may harm himself and any proof you may have from past actions he may of had. C