Where’s the compassion?

Recently I sought some advice from my local autism organisation about whether there were any services that could help my autistic son who is school refusing for the second time. 

Unfortunately the family support worker I ended up talking to was not very helpful.  She didn’t have sufficient knowledge and rather than refer us to someone more experienced she persisted in discussing how I was managing my son’s behaviour and bringing me up on not being consistent with visual supports.  This is not something I wanted to discuss to be honest as I felt we were doing an OK job at managing him.  Yes we had got a bit lax on maintaining visual supports mainly because my son had disengaged from them. In any case I didn’t go there to be told off about my parenting but to get specific advice.

At one point I got a bit emotional as a result of talking about my family’s situation but she did not offer any reassurance.  Instead she made the comment that she was a single parent of two (non autistic children).  Why was this necessary?  She was paid to support families not to discuss her own personal situation.

Then I wondered whether she responded like this because I had dragged my husband along with me.  Had she made the assumption that because I’m married it is easier?  I don’t doubt that single parents caring for disabled children do not have more challenges than I but to assume that I don’t have difficulties at all or that somehow they are less worthy because I have a partner is completely wrong.  I know, and I appreciate, how lucky I am  to have a husband whose work we can survive on but that still leaves me with the emotional burden of caring for our children.  This is not easy particularly when you have one child at home who is barely unable to leave the house and another autistic child who is also struggling with school.   

In any case I shouldn’t have to defend my situation and spell out why my life is difficult.  It shouldn’t matter whether I’m married or single as to whether someone offers support and advice.   Support should be provided impartially and not based on prejudicial attitudes as to who is the worst affected in society.  If someone needs help then help should be provided but tailored of course to the family’s situation.  As it was, I left with no more information than I started with. 

It may seem unfair of me to draw attention to one family support worker when I am sure there are many more who provide a far better service.  Unfortunately, in my experience, she isn’t the only one who lacks empathy.

Wherever I go I do not experience compassion or understanding from many of the professionals I meet.  They do not seem to understand the impact of autism on family life - the difficulties managing work, what its like not to have a day out or a holiday and how tired we can feel as parents and carers.  Of course how can I expect them to truly understand when they haven’t experienced the challenges of raising disabled children. 

Nevertheless they could be more careful with the words they use.  Having to listen to professionals criticising my parenting or making comments to the effect that I should be grateful that my child can do this and that is unhelpful.  It undermines the difficulties my children have, potentially denies them essential support and makes me feel even worse than I already do.  Above all it erodes trust between professional and parent.

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13 Responses to Where’s the compassion?

  1. I don’t think people CAN understand unless they’re in the same situation. The woman with 2 NT kids knows nothing about your family circumstances apart from what you tell her and she will have no proper hands-on experience with autistic children. It drives me mad when parents of special needs kids are supposed to just sit back and accept what the professionals tell them, even though they know very little. A lot of professionals, especially GP’s, know hardly anything about autism. They also make no effort to find out which is something else that infuriates me. Raising awareness to other parents is one thing, but when professionals and so-called experts won’t even listen, one begins to wonder if the cave is a better option.

    Hugs, CJ x

    • Aspie in the family says:

      Hi CJ. It gets me too, how we are expected to accept some professional telling us this and that. Its hard to accept someone telling us something when they have no real life experience of autism or aspergers. I do sometimes wonder whether its worth raising awareness when professionals are so resistant to listening to us. Saying that though, I hope that by sharing experiences parents can help one another. Deb xx

  2. Steph says:

    As usual, you write so well about the experiences that most of us have faced. It’s comforting in a strange way to know that others are out there who understand – you just wish that eveyone could take the time to listen and understand how it really is. Keeping fingers crossed that things get better for you – had a refuser myself this morning, largely because they were trying to make her do the silly school play….!

    • Aspie in the family says:

      Thanks Steph. It is reassuring to know others understand. That’s the great thing about blogging and tweeting; meeting others in a similar position. Sorry to hear about the school play. We’re having similar issues – my daughter refuses to do the carol concert because they want her to wear a blue tee-shirt and won’t let her stand by her friends! Sigh. Deb xx

  3. Jazzygal says:

    I hear what you’re saying and agree with your analysis. I also agree with Blue sky….sometimes they don’t believe us. The emphasis should be on the child, you need support now. It’s beyond visual schedules, someone needs to intervene! I was struck by the lack of understanding of Autism here and thought that strange. Given that you were onto an Autism support service. is there another one you can try?
    I do hope you get what you need for your son soon. You are good parents who need support.

    xx Jazzy

    • Aspie in the family says:

      Hi Jazzy, you know I was a bit astounded at the lack of knowledge as well. I have to question the criteria for employing a family support worker in an autism service. Surely employing someone with actual real life experience of raising autistic children would have been more beneficial than someone without. I think this autism organisation has messed up here. What families need are people with understanding and knowledge, not someone telling them how to parent. Deb xx

  4. Blue Sky says:

    Most of the support I have had is from my son’s school – even though I fell out with them for a while. Apart from that I feel that I would have had no support if I hadn’t presented at the local children’s hospital with my son. I think they don’t support us because they don’t BELIEVE us, or just hope that we’re exaggerating. I just hope that someone believes you too soon xx

    • Aspie in the family says:

      Hi Blue Sky, I think you have a point about them not believing us. To me this suggests their training in autism/aspergers is inadequate plus there is the professional v parent battle; you know as parents we’re treated as though we dont know anything but in my experience I often feel I know more about my children’s autism and aspergers than they do. I tend to find this attitude with the local authority and the health services who are unbelievably arrogant and condescending to parents. Fortunately my son’s special school have been quite supportive and I don’t feel I’m being judged or stereotyped by them which makes communication so much easier. Deb xx

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  6. alisonwells says:

    Of all difficulties and disabilities I think that Aspergers in particular is a tough because it’s not something that is very easy to see from the outside and in passing, so much of it is behavioural that sometimes I even question myself. As you said it is often not understood by the professionals, especially in terms of the emotional and mental impact. There is very little advice or support readily available in the general sphere. It’s only when I get together with other affected parents or check out the twitter autism hashtags that I feel as if I have final arrived in a world which understands utterly. More than anything you need an advocate in the educational sphere and in terms of getting services for yourself but I know from what you’ve said before that it is absent. I hope you will find such a person or that you can access someone in the health services who can help. I wish I knew of something more I could suggest.

    • Aspie in the family says:

      Hi Alison. I agree, meeting and talking to other parents made me also feel as if I’ve finally met those who understand. For me it shows how experience is vital to develop true understanding and empathy. As for the educational side, I am totally shocked at the lack of resources for our autistic children and the health services are not much better to be honest. Thanks for commenting. Deb x

  7. fiona says:

    I understand how you felt completely. There is nothing worse than finding the courage to ask for help and then being made to feel that either you are making a fuss over nothing or it’s all your fault anyway and why aren’t you doing X, Y or Z??? Eh? E h? Eh???
    I have chosen to avoid all such organisations. We have a local group run by a dear friends of mine and a branch of the NAS in Hexham. I’ll touch neither thank you very much.
    I’m really sorry you had such a bad experience I can understand how desperate you must feel for help and why you asked. I wish I had suggestions to offer but school refusal is totally alien to me. Keep posting about it and tweeting, it helps to educate others. I for one am there if you want someone to sound off to. xxx

    • Aspie in the family says:

      Hi Fiona, thanks for all your support. I was really disappointed with the attitude of this support worker; she made me feel as though I was the wrong type of parent. I also started to question how knowledgeable she really was. I certainly won’t be going back there again. Much prefer doing things myself or getting tips from other parents/carers. Deb xx

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