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Uncomfortable in support group - do I rock the boat(10 Posts)
My ds has a diagnosis of ASD. Our CC employ specialist autism teachers to go into the school to see how he is getting on and to suggest adjustments that the school can make to ensure his needs are met. They can help you argue a case on behalf of your child with the school (if they believe in it) and are imo an all round good thing. We have met the EY advisor and next year after a term will we be handed over to the specialist autism teacher for the area (call her AT). AT is well respected and holds quite a bit of power as far as I can see.
I went to a support group for parents of children with ASD and ADHD/ADD run by a charity. This is supported by the CC and all the local schools (they all advertise it) and AT attends the meeting to offer advice.
There were about 8 mums there, the charity leader and AT. I and several other newbies just sat quiet during the meeting but it was srill helpful to listen to the problems other people have had and suggestions of how to solve them. At the beginning of the meeting I was very impressed with AT, she had loads of ideas and seemed passionate about her subject - she clearly cares that children on the spectrum get the best out of their schooling. She never blamed the children for any of the behaviours that were referenced but instead sought to find explanations for why and ways to help.
However, about halfway through the meeting I started to become increasingly uncomfortable but could not pinpoint why at the time. Having processed it now I think its that she said on numerous occasions that children with ASD are selfish. They don't care about anyone else's viewpoint or needs. In retrospect I find that comment deeply offensive. She also made other sweeping generalisations about how these children are never likely to want to read a book for pleasure as they don't enjoy stories etc so give them minecraft manuals and cereal packets to read. (My son loves stories and all kinds of imaginary play as do a number of ASD kids I know). I also found that lots of language was used about "us" and "them". I have found similar "us" and "them" language used in lots of contexts and think its a poor way to describe difference. There is no homogenous "them" or even a homogenous "us". Further, in a group of parents with kids on the spectrum its likely that a certain number of these may also be on the spectrum themselves or should support groups only be for NT parents who want to complain about how hard it is living with someone with ASD?
So, a few questions - am I being overly sensitive (my main upset was the selfish comment)? If not obviously the easiest answer is not to go anymore (problem solved). However, should I be trying to set AT right about these points but, if I do and manage to upset her it could be difficult going forward as I will need her help. Also she clearly does a lot of good in that support group with her ideas and knowledge - if I start objecting about her non-PC language she might simply give up going to the support group and then all of the other mums have lost out on free advice.
No, you are not being overly sensitive - I would be furious if an 'autism teacher' generalised those on the spectrum as selfish. The 'us' and 'them' stereotyping is offensive too as is the pigeon-holing those on the spectrum saying 'they' generally don't read for pleasure etc.
You make a good point that her stereotyping is also offensive for those attending the support groups who are themselves on the spectrum.
Can you contact AT by letter/email setting out why you felt uncomfortable - particularly making the point that AT may have been addressing her comments to adults themselves on the spectrum. I wouldn't be overly worried about 'offending' AT so that she doesn't attend the support group any more - if she continues to make such comments the group is probably better off without her.
I know you are going to need to work with AT in the future but in reality you need to challenge her on these comments before you start having any working relationship with her.
Grrr, I have met a few people like that over the yrs who do probably care underneath but due to complacency make sweeping generalisations which are insulting.
I have been known to call people on it, I am not in this for popularity I am trying to get the best possible support for my family.
I have had yrs to build a thick enough skin to do that though and have Asd myself!
This is everything I am thinking about at the moment as we are at a crossroads where specialist care involves dealing with individuals with similar attitudes to those you describe and ms involves lack of know how but a willingness to learn and try.
In your situation I would start challenging "selfish" as a descriptor and querying "hate stories". . God it's awful.
I think you are right, I need to pull her up on it. Wish I had been quick-thinking enough to do it during the meeting as it would have been easiest then now I have to approach her separately as the next meeting is not until end of September. I have also encountered something similar with my son's nursery teacher (MS but 18 years of experience with sn outside of mainstream). I've managed to contradict her at the time but I can tell she doesn't believe me when I assure her DS has a really good and well-developed imagination. I think I need to find a good article about ASD not being selfishness to send her. Thanks for replies
Oh my god this makes me so angry! I love how ppl always say how we have to try and challenge the stereotype and show the different representations of autism. If a bloody AT can't see that then I don't know who can 😡
You don't have to fix everything and everyone. My ds has an amazing imagination and is uber empathetic.
I think it's better that you didn't say anything at the time. You've had some time to think it through and consider how to approach it. When you do contact her, you could say you didn't want to challenge her professional status and experience in front of others but you do feel it's important to treat people with autism as individuals and avoid the stereotypes. I do agree it's important to set her straight, not just for herself and for you, but because she's giving misinformation to vulnerable parents who will end up with very low expectations for their children if she keeps on advising them in this way.
Present her with some of the recent research into how people with ASD are likely over empathetic rather than lacking it?
You can always challenge her with evidencing your DS. Ask her if she thinks the group is actually the right thing for all parents of children with ASD if she's only going to discuss those who follow the old stereotypes!
Ask her if she means inflexible thinking rather than selfish and refer her to the descriptors in diagnostic manuals.
this resonates with me so much. I went to a support group run by CAMHS for newly diagnosed children's parents when ds2 was 8.. It was very helpful in many ways but I felt more and more frustrated by the negativity and the patronising way a lot of ASD traits were discussed. I found myself identifying more and more with my son and less and less with the professionals running the course .
I think they do make a major miscalculation when they don't remember that some parents are also on the spectrum. To be told you are "selfish" by default, when you are hoping to do the absolute best for your child, who also has autism, well, words fail me.. There was another thing which annoyed me I remember..the lead professional saying we had "beautiful" children...honestly, why are they anymore beautiful than any child...She seemed to claim there was some reason that autistic children were more beautiful..Was this meant to be a consolation prize?
Needless to say, I fell out with this lead professional and she wrote something horrid about me when she signed ds2 off from CAMHS
Taking the long view however, 6 years on..I try to use the experience constructively, and I often use it as a sounding board to remember how people can have stereotypes and misunderstandings, and also simultaneously I acknowledge that ds does have "difficulties", and perceptions that are not helpful to his communication with others, (as do I) and I cannot just pretend or ignore this. Even if it felt bad to be reminded of it at the time.
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