To Who It May Concern,

I have received your decision about my son.

Having never met him or previously known anything about him, you send me some rather difficult to navigate 40 something page form to fill out and form judgements.

I’m blown away by the fact you deem him unworthy of your support.

Having had him at home since September last year as he went into a complete meltdown with his social anxiety due to his ASD; having fought for that entire time for an EHCP for him, and subsequently secured him a place in an ASD unit this September; having lost my child allowance for him as he wasn’t in education due to his meltdown, and being told I now have to prove if and when he is back into education to reinstate it; having increased my working hours to cover the costs; having just finished clearing up soiled underwear and tissue from my bathroom floor, again…..  I sat down to peruse your reasoning and criteria.

My first thought is that you should have interviewed us. Met my son. Seen how difficult he would have found it to speak with you, or even be in the same room as you if it was a tricky day. Tried to look into his eyes and find a simple answer for your simple questions.

My second thought is that gaining a job myself in a special needs school and receiving top class training in how to help autistic people has really just made me hypothetically shoot myself in the foot. To manage well with a difficult child is clearly not the done thing. To not ask for help until you really feel you can’t manage without help is also not the done thing- as far as I can see, those who know the system, are born into the system, and somehow automatically receive help- and those of us who have no idea what is even available let alone where to go for that help stand no hope of gaining the help we need for our autistic children as they become adults. This is an incredibly difficult system to understand- on every level – and I’ve always considered myself as reasonably intelligent.

Thirdly, my son is the eldest of 4 children. I have not cleaned up poo for any of the others for many years, and yet, your form tells me ‘you can manage your toilet needs or incontinence unaided’ - i.e; because your mother does it, we class you as independent??!! That’s not independent- that’s trapped at home with Mum as you’re too frightened to deal with it. That’s not independent, that’s leave the room when the consultant tries to discuss it with you, and then shout and scream at your mum for not just getting on with it and for being stupid enough to want to get him help. That’s not independent. That’s embarrassed, scared, unable to verbalise what even happens in your body to make you unable to control your toileting. THAT IS NOT INDEPENDENT!

Fourthly, ‘You can express and understand verbal information unaided’ – well his educational psychologist must be wrong then, because he got his place at the ASD unit based on his massive problems with social communication, and anxiety that brings. My son can’t ask where a toilet is, he can’t say he feels unwell, he can’t say he is lost or scared or unsure or unable because the social anxiety strangles him and makes him so afraid he has days where he won’t even leave the house. He is 17 years old and has never gone off with a friend to party or into town to shop – he will not and cannot access these things without a family member. THAT IS NOT INDEPENDENT!

I do not for one second expect you to change your decision. We are merely a long reference number on a sheet, and clearly not exhausted parents trying to do the best by our autistic son. While I’m here to look after him he will be fine, but why on earth should I feel terrified that one day his truly independent brother and sisters may be burdened with looking after him because the system deems him to be independent too. He isn’t, and no amount of money he does or doesn’t receive will change that, but I was hoping it might change some things…. Maybe get him his own bathroom to take the pressure off him, sharing with 5 other family members must be hard for him sometimes, or maybe to be able to do something to try and stem his social anxiety more, I don’t know- just something to make his life easier and less scary- to build his independence. To build his confidence.

Being autistic isn’t easy. This system isn’t easy. And I don’t believe for one second it should be this hard. My son is an amazing, brilliant, kind, gentle human being who navigates this world differently to you or I. I just wanted you to know that. Maybe one day these thoughts will reach the minds of those people who put the system in place. Maybe one of them will have a child with autism and realise simple box ticking and adding up of numbers doesn’t work for our children. They are much, much more 3 dimensional than that.