Posted in autism

Autism is not a disability 

At Z’s doctors meeting he asked was we struggling with anything in particular, ok sleep is a big one, he was willing to write a prescription for melatonin, he’s still young, we go through phases, it’s not every night. I explained I’ll see how full time school goes, and obviously if he gets worse I’ll ring. I mentioned how Z can’t deal if the car isn’t outside the front gate. He said he would refer me to occupational therapy see if they could help get a disabled space or help with a drive. Occupational therapy said they didn’t do house adaptations they helped with buttons and cutlery, apologised and said try social services. Z had another appointment so I waited, explained to doctor what occupational therapy said to me. This was a new doctor he said there has to be someone who can help. 

This week a phone call of a lady from social services saying he had been referred but she’s really sorry and it’s not something they can do but try this part of social services. 

Yesterday I rang that part of social services. 

Words failed me. 

I was shocked.

Apparently autism isn’t a disability it’s a behaviour problem. 

When I rang and explained how I had gotten her number her attitude was appalling from the start. She asked me does my son walk, I replied yes, she said no one would help, the doctor don’t know what he’s talking about because Z isn’t disabled, he has legs and can walk . 

She asked what happens if the car isn’t where he can see it, I said he gets upset, he can run or throw himself to the floor. I explained that if it’s there and we walk up away from it he knows we’re walking to the bus, if it’s there and we walk down we are meeting grampa. If the car isn’t there and have to walk to it he can’t understand that, it’s confusing it’s not his routine. Her reply threw me. If I can’t manage my sons behaviour I need to be referred to a behaviour specialist that would put actions in place so the car can be parked anywhere and Z would be fine. So I said ok thank you, it’s ok I’ll go and get a loan from the bank and do it myself, I was just told someone maybe able to help me financially. To be told that putting a drive there would be spoiling him, not everything in life is always where it should be. 

The way she spoke to me I wanted to cry, not because someone had told me no, but the attitude, how dare she tell me I can’t manage my child’s behaviour, she knows nothing about me, she knows nothing about Z. Putting a drive there isn’t spoiling him, the way I see it I’m looking after him as a parent should do. Does that mean the locks I have on the window shouldn’t be there? Is that spoiling him? Should I let him open the window and fall out, because well he has to learn that just because a window looks closed it’s not? Same goes for my locks on my doors, should I just leave him in the kitchen because the oven isn’t always on and well when it is if he burns himself he’ll learn that it’s hot? Really?! 

 She asked me does he talk, I said no, he babbles but don’t speak, her reply, oh speech and language will work with that and get him talking. Does she not know that speech and language sign children off, and they get an hour maybe once a week sometimes not even that in school? 
What if I was struggling mentally, lack of sleep can do that to someone, she had no idea who I was. I was ringing for help, not to be told that I can’t manage my sons behaviour. As I said I partly wanted to cry, more out of anger and shock than anything else. How can someone be so rude. How does she know that I would have been fine when I put the phone down, I could have cried, it could have stopped me asking for any help when and if I really need it. I could have just built up all my strength to ask for that help to be knocked down in less than a minute with not a care in the world. 

And that is why I have no faith in social services, yes I could put a formal complaint in, but where would it get me?  An apology? Doubt it. I’m big enough to ‘take on’ a store or a person by social services, I don’t think I’m that big! 

But for someone working with vulnerable children and adults, she sure needs some autism awareness. If autism was a behaviour issue then my son would be a nightmare. I can honestly say out of a few Nuro typical children we bother with, Z is the most well behaved one there. He listens to no, I can manage his behaviour. I will not ask for help again, I’m glad it’s written in his notes that he’s struggling with this area, also the whole time he’s been in school he’s had one bad day, that one day was when the car wasn’t parked outside, we were walking but had to pass the car, he refused to walk, he stood by the car crying so call it spoilt but we went in the car! 

Author:

first time mother, first time blogger

16 thoughts on “Autism is not a disability 

  1. Even reading this i am disgusted. How, in a world today, can Autism be disregarded like this?! It is ridiculous that this even happened. You would think that social services would be more aware! I would complain. This should NEVER happen.

    Liked by 1 person

    1. It’s why would they diagnose autism if it was a behaviour issue. Is she saying that these things are all made up? She needs to spend a day with a few different people on the spectrum. I’m sure that would change her attitude!!

      Like

  2. She needs to learn some tact, and people skills. If she had said, “unfortunately we are only able to offer financial support for adaptations to people with physical disabilities” it would have been frustrating but at least she wouldn’t have personally insulted / offended anyone. Personally, I’d feed that back to social services. You don’t have to make enemies of them, just suggest some additional training for the people at the other end of the phone? Our son has Autism, is non verbal and throws himself to the floor a lot. He also needs help climbing in and out of the car and fastening his seatbelt (he’s 5.5). We have a blue badge but I had to fight for it. Like I had to fight for speech therapy, and a nursery place, and a school place. Fighting is, unfortunately something special needs parents have to do a lot of :-S

    Liked by 1 person

    1. Exactly my point, if she had said it like you said I would have accepted it like you say. We have a blue badge, I was lucky to get that without much of a fight! Speech therapy takes place in school. It’s wrong that parents have to fight for what their child needs.

      Like

  3. I would definitely put in a complaint. I had similar problems with my middle boy, I was sent on a parenting course! Every one involved agreed he has high functioning autism, the woman I dealt with was my route to getting him diagnosed, she key me down badly. I wish I had complained, as that was the last chance I had for diagnosis. You need help, push for it xx

    Liked by 1 person

  4. Not sure where you are… but it definitely seems you have been talking to completely unhelpful/unaware people. Are you aware there is a Disabled Facilities Grant – which children can also apply to – local/district council in England are those that assist with this, not County Council. This may be of help regarding adaptations to the home – and it is NOT just about taps!

    Also, I’d refer the council to the Autism Act and Equality Act in the complaint – usually can be begun online. However, having complained about local services, even as far as with the ombudsman (LGO) and having complaints upheld, I wouldn’t hold your breath about that making any difference… though may make you feel you’ve done as much as you can.

    Local charities are who we’ve had most help from – perhaps that is a good starting point as you won’t be alone in the experiences you have had (sadly)…

    We remain shocked but no longer surprised that those who receive a salary for ‘helping’ as civil servants are so ill-informed and unhelpful.

    Liked by 1 person

    1. I’m in Wales, so unfortunately we don’t have an autism act. When I mentioned the disabilities facilities grant to her I was told it’s for people with disabilities, autism don’t count as it’s behaviour issue and not a disability!

      Like

    1. I don’t think she knows about autism and disability she must just work in the grant side of things, if you say yes you’re in a wheelchair she’ll forward you on. I think she needs more training in how to speak to the public.

      Like

  5. I’m so sorry you had to deal with this ignorant woman.Surely at the very least he should be entitled to a disabled parking space. There definitely needs to be more autism awareness, well done you for talking about it. She needs to be ashamed of herself, giving advice when she knows nothing about it.

    Liked by 1 person

    1. I’ve queried this with the local Council and been told it’s not something they do, I told them paint a spot and I’d rent it off them! If they done that for other people who needs it they would make a fortune! A bit like a parking permit.

      Like

  6. I am so sorry that you were told by an occupational therapist that they can’t help. Here in the U.S. we OTs see more children with autism than any other children with any other diagnosis and address many of the issues associated with it. And I’m so sorry that you had to deal with such a callous, ignorant person. It’s really inexcusable for someone in a social services position.

    Liked by 1 person

    1. Thank you, I think we need to learn from our friends across the pond, I believe keeping him safe is helping him it’s not spoiling him. Maybe even showing him that there are always ways around things that you struggle with!

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s