Parents and new diagnosis

Hi my son was diagnosed with severe autism this year and we are starting to accept this. However the world around us seems different now. My son will need different  support  and we have so far delt with the opinions of others and my son's differences by avoiding peak times and places. Obviously this is not a permanent solution but now we have a diagnosis we need to change permanently do any parents want to talk about how hard it is for them to realise that their baby is going to have to overcome great challenges  and mum won't be around  forever.

  • HI 

    You don't say how old your son is, but because you say severe, I assume it is at the earliest that specialists feel it is safe for them to commit themselves to, ie about 3.5 years. Yesterday I wrote to "Tears over my son" posted on this website. The following which I copy in to save typing. 


    As it is Autism week, or for other times, you could just design and Print off a few, half dozen, card sized (A6) or pocket sized approximately leaflets saying that your son is Autistic, (I will assume more than most, since he has been diagnosed at the Age of 3), and say simply that your son is severely handicapped and if they would like to learn more about people with autism, refer them to this website, or to google autism.

    Write that this is how your son behaves and he will need to have people to understand what being diagnosed autistic means.

     To me this diagnoses came as a great relief that we at last had a diagnoses for his behavior and we could at least start on the struggle up from Abyss we were at the bottom of when my son was at last diagnosed for his behaviors. 

    I am the father of a son, Now aged 36, he is severely autistic, he was diagnosed at the age of 3.5 years.

    When he was 8 years old at a Medical Appeal Tribunal That took years to get to, being rejected at every step. this I won, where I had claimed Maximum ( as it was then) Invalid Care Allowance, and Maximum Mobility Allowance for him then and got back payments as requested, from when I first claimed. 

    He was running around the walls, like Billy Whizz.

    This was, and still is, only for Physically Disabled people.  I was able to establish that my sons autism was a physical and not a mental disability, or they would not have paid.

    I do not doubt that being autistic and know it might affect you mentally such as depression. BUT "For a blue badge it has to be a physical disability."

    My son does not know he is autistic. He knows the day and the Time, or what you should be doing at a specific time, or he will get a violent meltdown, the Art is to learn how to avoid certainty of expectation, such as by saying "SOON" when he request "AT" to pin it to a time.

    Today Invalid Care Allowance has been replaced by PIP. This is another Minefield. As is ESA needed for adults.

    if you claim this, you need a diary type records as to his behaviors, complaints etc. such as your outing, Dropping down in shops and even outside for no apparent reason, and the fact that you have to, not only keep him extremely close to you, except in a safe enclosed environment, but you may have to control his movements using a harness to protect him from others and others from him, because he is unpredictable Physically.  My Adult son has a PIP score of 47. including 12 for maximum mobility allowance. The Maximum needed for both benefits is 12+12. 

    I could possibly get a higher score, because he cannot comprehend language as language, any language other that cartoon phrases he has copied from Cartoons. It would be "pointless" unless he was arrested for something and it would needed to show he could not comprehend the proceedings, Just think ahead.

     You will need to get further advice from a specialist in this respect for your son. You also need to be careful, just what films you let him see, My son watches Bart Simpson almost Full time and there are violent parts in those cartoons that he has copied and enacted and enacts, so you be aware they affect him. He also still refers to Thomas the Tank engine from his very earliest childhood to describe something. His memory is extremely  accurate over his lifetime.

    Good luck to you and your son.


    If any of this helps you and your son cope it's a start.

    Good luck  I understand the deep hole you have been in.