A journey through grief with autism.

Alan Greenwell

3-Minute Read


I have spent the past month trying to fill in the Disability Living Allowance (DLA) form for Tam. It is a horrendous form. Today I managed to finish it. I can hear you ask why did it take so long. Well it a little window into looking after an autistic, anxious, grieving boy.

Tam constantly wants and needs attention. Firstly to keep him safe. Even at home he could eat something that is non edible or bit a chunk out of something and get himself into difficulty very quickly. Secondly, if I am out of the room for too long (and that varies according to Tam) then he gets upset and starts banging around the room. He either throws himself against the furniture or starts to hit himself. Tam is “content” when I am sitting in a particular place (where Bev used to sit on the sofa) and doing no more than either watching him or reading on the kindle or phone. Anything else causes anxiety.

I have tried to explain to him that sometimes I have to do something else. And I try to do that something else like fill in forms but he gets upset and it ends up with him getting a bit violent and trying to grab and break pens, paper or whatever I am trying to do. It then takes a while to calm him down. Now its not that I will give up trying to do these things with him. I will continue to try and at some point I hope that he will be ok with it.

So how have I managed to get a 40 plus page document down with Tam around? Well when I do manage to get him down and asleep I give myself 30 minutes to calm myself down. A part of that 30 minutes has been used to fill in a part of the form. Not every night not every day but when I could face the challenge. Anyone who has filled a DLA form out will know exactly what I am talking about. The form asks questions in the most insane of ways and asks for details that are no way connected to dealing with an autistic boy. The evidence that they ask for is ridiculous.

So to sum it up it is a bit by bit with a long laborious reread to make sure that everything is filled in correctly. Now the only thing left to do is post it.

Once posted it will be anxious wait to hear back from them. I always remember the first time this was done for Tam. We got turned down and had to raise a complaint to get a review done. A few weeks later we got a phone call saying that Tam would get DLA and that they could not understand why it was given a no in the first place. So the anxiety need to be locked away for a while and then wait and see.

Sleep well

Alan and Tam

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