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Not Understanding Autism (Part 814)

October 19, 2013

This makes me a bit sad. Not shocked. Not angry. Just an ache in my gut.

A quick recap. Late on Monday afternoon I picked up the keys for Steven’s new house. On Tuesday, we took him to see his new home. When we first viewed the place the Wednesday before last, as well as the manager from the housing association, there were also a man from Hillingdon’s housing department and Steven’s social worker. They saw the condition the house was in and heard me talk about decorating it, so it will look great for when Steven moves in.

On Wednesday afternoon, I received an email from one of the adult social care team. The main gist of the email was reminding me that they had to carry out Steven’s FACS assessment very shortly. However, the email started with the sentence: “I trust the move went well yesterday and Steven has settled into his new home”.

Now, I know this was probably a pleasantry that hadn’t been given any thought at all. But it made my heart sink. How on earth could she have considered it possible that we would have moved into the property less than 24 hours after getting the key? Packing? Removals? Utilities? Decorating? Autism?

I’ve never read Hillingdon’s autism policy – I’m not sure they’ve even got one. But anyone with even a sprinkling of autism knowledge would know that it might not be a good idea to uproot someone with autism from their home, even if the destination is a good one. Preparation (as the positive behaviour unit always used to proclaim) is the key to keeping an autistic person’s anxiety levels low. Nice and easy , at a pace that Steven can manage.

The despairing feeling compounded on Thursday, as I spent most of the day phoning the different companies to notify them of the move. They all got it. The man from the electricity board understood that having a key meter is not the best idea for someone with autism and fixed a time to change the meter over before we move in. My broadband supplier understood that for an autistic person to break their Friday Youtube routine was dodgy and we’ll have broadband live, the day before we move in. The man who sorted out the contents insurance’s wife is a child minder and has two autistic kids in her care. We chatted for about 10 minutes about he need for routine.

They all got it. How can the agency that you’d most expect to understand autism (the social care department), should be the one that demonstrates the least understanding.

That strikes me as very sad.

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From → Social Care

8 Comments
  1. ParentCarer permalink

    I agree it is very sad but you are just a number in their book. They do not understand autism. I have this problem in the day centre as they no not understand that my son needs to hear a consistent message from all the staff anything else confuses him and ends up in him having melt-downs. He returns home agitated and I have to calm him down . Not good enough from so called professionals.

  2. I havent got an answer as some people who work for SS must, by the law of averages, hae Autistic children of their own or relatives who have. There must be an inbuilt billigerence in them towards us..thats certainly how it feels at times.

  3. Because they don’t want to understand………… they don’t care like every other adult social care in the country…………..

  4. Cathy B permalink

    I have come across this so many times and it never ceases to sadden me to the core. Now I’m housebound with physical mobility problems and depression. Following my recent mental health meltdown the local CMHT came out to see me (a few weeks after the crisis of course). They said they couldn’t help but suggested I self-refer to a branch of the charity MIND but cautioned me that I would have to attend MIND’s offices 10 miles away. To me, this showed a complete lack of comprehension of my health issues. Sadly, this isn’t the first time I’ve encountered this.

    So, if it helps, Steven isn’t alone. But of course it doesn’t help because this really shouldn’t happen.

    And I have recently had to move home (‘stress’ doesn’t begin to explain it) and the support I got from my utility company (they provide my gas, elec, phone & b/band) was beyond excellent. They ‘got it’ and even supplied a dongle so I could use the internet before BT Openreach could be bothered to connect my landline. But for their intervention I would have been nearly 4 weeks with no way of ordering any groceries. How different from the healthcare ‘professionals’.

    Oops, sorry for the ramble. You hit a nerve.

  5. Mark this blog made me want to cry. I so feel your pain. I’m in this with so called professional who are supposed to help and advise with my autistic son. They haven’t got a clue!!! I feel like screaming. Why are our loved ones invisible to them?

    Sadly as someone said we are just a number in a system. For some no matter how many times you explain what the needs are they still won’t grasp it.

    You as you always do are putting your son first. You are ensuring things go as smoothly as possible. Your son is very blessed to have you.

  6. Steph permalink

    The best professionals are the ones who are also parents of children with special needs. If you don’t live it, you don’t really understand it – no matter how many books you’ve read or courses you’ve been on. I say this as a parent of an autistic son who is training as a teacher of autistic children. However, on a positive note, I am heartened by the number of parents who are now joining the ranks of the professionals – we are the way forward because we truly know what help is needed. It is getting better but it will take time.
    Your son is privileged to have you and all that you are doing is making his life better in every way possible.

  7. It is very sad and frightening for any parent of an autisitic child or indeed of any child with learning difficulties….

    • Pauline Thomas permalink

      I have found in my experiences with the various social care bodies that if they cannot understand your loved ones needs or are unable to fit them into their ‘services’ they proceed to gossip about you to all the other agencies who maybe called in ‘to help’. So. unprofessional and so infantile and yet so typical of the people whose employment is reliant on looking after our loved ones needs

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