After diagnosis

Hi,

My 3 year old son recently was diagnosed with autism and wanted to know what that do for us? What happens next? what does that mean for his education? What benefits and advantages are there?

Alma

  • Hello,

    I’m not the parent of an autistic child, so I can’t give you first hand advice, but NAS does offer a parent to parent service which you can find here. The NAS helpline can be found here. Child Autism UK also have a helpline, you can find it here.  Ambitious About Autism are also worth checking out. This blog is written by a UK Mum of an autistic boy.. If there is an autism group local to you, it may be an idea to contact them. They may be able to put you in touch with other Mums in a similar situation. Talking to someone aware of the problems you are facing will at least give you some sort of support network. All the best, Graham.

  • Hi,

    I am the father of a severely autistic son (Now Adult aged 36), like you my son was diagnosed at the age of 3.5 yrs, while he exhibited all known autistic behaviours for a small child but we could not recognise these as being autistic., It was not really a worry in a family of 6 children going to school or University, but it was his speech deficit that became an increasing worry, We also had problems feeding him from birth, Still do!

    We were lucky I suppose because there was nearby a special school for children with communication problems, and being severely autistic is such a problem. There Most of the Children were boarders from Mon - Fri and some others, as my son were transported daily in a "Taxi" with an assistant and brought back again after school. This was provided by our local authority social services. 

    So I suggest you make contact with your social services department, and see how your son's official diagnosis strikes with them. Because he should be getting their help now.and they will not want to spend any money.

    You will always have a doctor GP who may be able to reinforce your dealings with Officialdom. You also have an MP and possibly other elected representatives who can be useful to let officialdom know they are being monitored. as they all want an easy life, work 35 hrs Monday to Friday, have weekends off, and think of holidays and their pension. 

    You should be able to claim attendance allowance if you provide (old rules)? 35 hrs a week this could be at a weekend.

    You should be able to claim for a Blue Badge to assist him to be transported. There are some of rules about this. This took me 8 years to establish this right eventually at a Medical appeal Tribunal  for Maximum disability benefit and Maximum mobility benefit as they were then. With him almost running round the Tribunal's walls like Billy Wizz., and lately with ESA and PIP, because he need constant Directing and guiding when out, to protect him and others from danger..

    You really need to seek the assistance of your local Citizens Advice Bureau to get further directions to perhaps help with benefits for your own circumstances.

    My advice is obviously (1/3 of a Century old) but we still have to care 24x7,  with us his Unpaid Parent Carers of last resort as our local council have withheld his Direct Payments for the last 5 years, something like £150K+ that paid for two carers to take him out and about for just 35 Hrs of the 168 hours in a week. Something like £150K + This is the subject of an official complaint in progress, that I will deal with later this week.

    Obviously you will get more up to date information from NAS Carers  from this website/

  • In regards to financial benefits, you will now be entitled to disability concessions, such as a bogof ticket at major attractions and you can apply for disability benefits. As I'm over 18 I receive PIP, it's DLA f under 18s. I haven't had any issues with applying for disability benefits but suggests you seek advice in how to fill out the form and what evidence to provide if you're new to it. This webpage is useful - www.specialistautismservices.org/.../PIP-Guide-2016.doc

    It depends on how being autistic effects your son in regards to what it means for his education.  I absolutely loved school and was very academic. The only support that would have been useful, as I was diagnosed with later life, was knowing I had Irlens and being given green notebooks to work in instead of white. On the other hand, a relative is going through the diagnostic process now and when he was at school he found the environment to be overwhelming and would regularly skip lessons. Looking at shorter school days and strategies for coping with sensory overload would have helped him. 

    I'm pregnant and was only discussing yesterday how fortunate my child will be if they are autistic as I have a wealth of experience and knowledge to share with them. If you do not have this knowledge base you might find it useful to join a local support group and go on any courses your council puts on.  The following FB pages regularly have posts where autistic people and their parents ask for advice so they could help to raise your awareness.

     

    https://www.facebook.com/autisticnotweird/ 

    https://www.facebook.com/TheGirlWithTheCurlyHair/