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Improving support for children with High Functioning autism in mainstream!

CatFrizz's picture
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CatFrizz


Improving support for children with High Functioning autism in mainstream!

Thu 19 Sep 2013 9:28am
Topic: 
Hi all,
 
My friend and I are (after 3yrs of planning!) in the final stages of setting up a support service for children with high functioning autism in mainstream schools in London. Aswell, as providing individual pupils with ASD 1 to 1 social support during playtimes we will be providing  art therapy workshops and autism awareness sessions for whole classes. It will be offered to schools on a termly basis and initially geared towards yr 3- yr 6 children.
 
We would love to hear from parents about their childs experiences of mainstream education so please please reply with feedback- good or bad!
 
Also, please let us know what you think about our proposed service as it'd be great to hear what parents think about it.
 
 
 
Thank you,
 
 
 
Abi & Cat

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  • Whirling Mind's picture

    I think every school should have access to something like this.  I have just attended a scrutiny panel meeting regarding the failures of services for autistic children in my area.  Parents have asked for more training in schools so that staff awareness is increased, an autism champion for families to contact via a hotline, autism awareness in the NHS, post diagnosis support, better assessment procedures etc.

    My daughter is in an ASC unit attached to a mainstream school.  She has just started integrating.  She's only been going since May and her complaints have all been about the ASC unit.  They have a one-size-fits-all approach and she is being pushed a lot with her handwriting which she finds difficult.  This has spilled over into her integration sessions where she was kept separate from the rest of the class to re-do work because the TA said she had rushed it.  It then happened again, when she said she tried her very best and was told that it was not her best (talk about trying to inspire a child - not) and made to re-do it.  These are staff supposedly with a good level of autism awareness so if they are that bad I can imagine how bad some mainstream experiences will be.

  • CatFrizz's picture

    Hi Whirling Mind! Thank you for your reply- feedback like yours is essential for us. We are always looking to hear from parents (and young people with Autism) about every aspect of the service we are developing- especially in the crucial early stages.   It's reassuring to hear that you believe this is a service that every school should have access to. We really believe that more needs to be done to raise awareness and provide meaningful and appropriate support for children with Autism in the mainstream setting- where, too often, they can slip through the net and end up not having equal access to learning opportunities.

    The issues you mentioned about your daughter being separated from the rest of her class make us wonder about the ‘integration’ process! Obviously it’s important to follow things through and set healthy expectations, but it seems entirely understandable that you haven’t been too impressed with some of the support so far! Is your daughter getting any support during her ‘integration sessions’ to interact with her peers? This is something we are quite focused on at the moment: supporting communication, social interaction, building confidence and decreasing any bullying issues that may arise.

    re: the TA's approaches, we also agree that it would be ideal if teaching staff received more ASC training. How about your daughter’s class mates? Are there any measures in place at the school to raise awareness of ASC amongst her peers?

    This begs the ultimate question: In your opinion, what changes would you really like to see at school for your daughter? We have a substantial list of changes we would like to see in schools- but we are very keen to ensure that our vision echoes the most importance voices of all- the young people and children we are going to work with and, of course, their biggest advocates: their parents!   Any comments you have will be taken onboard with great interest!       Abi & Cat Smile

  • CatFrizz's picture

    p.s. the scrutiny panel meeting you mentioned- it sounds like you've been very proactive and kept well-informed, I hope you see some positive results- especially regarding awareness in the NHS and post diagnosis support- plus all of the other important and on-going concerns

  • Whirling Mind's picture

    I personally don't think there is enough autism awareness in the mainstream.  My daughter told me she overheard a mainstream boy say when the ASC unit children entered the hall "oh look it's them, they make us laugh".  I told her perhaps he meant that some of the wacky ways children with autism deliberately entertain us sometimes, and she said that it was definitely said in a way as if they were laughing at them.  This illustrates that mainstream peers need a lot more education!

    My daughter did have TA support but she feels the TA is too strict, doesn't understand her and she is feeling negative about a lot of areas of the support, which means that their one-size-fits-all approach isn't working for her personally.  As they say "when you've met one person with autism, you've met one person with autism".

    I think it would be great if the school got an adult with autism to speak to the teachers and perhaps contribute to an assembly where questions could be asked, to allow greater understanding of autism.  I am an adult with ASC but I personally couldn't do it, I do know there are one or two adults with ASC on the circuit though, so there would be someone that would do it.  I think they try too much at school to fit a round peg into a square hole, instead of accommodating differences.

  • Tallulah's picture

    Good luck Abi and Cat! This sounds like an excellent service.

     

    I am an adult with Asperger's, and I remember breaktimes being the most difficult thing. Stuff like making sure the kids get to the right place to get food, an appropriate place to eat if they can't cope with the dining hall, and facilitating socialising with others (eg, group games) are things I would really have benefitted from.

    Laura - Community Champion
  • CatFrizz's picture

    Hi Whirling and Laura,

    We definitely agree that more needs to be done to raise awareness of Autism in the mainstream setting. It seems illogical to us that a truly inclusive environment can be established without it.

    Whirling- Sorry to hear about your daughter’s experiences L these are exactly the kinds of issues we are aiming to address.

    We can also relate to the ‘one-size-fits-all’ problem- And because we know that teachers cannot tailor their classes perfectly to each individual child (i.e. they cannot have 30 different versions of one lesson to implement simultaneously) we believe that there needs to be some sort of additional support to ensure that no child slips through the net as a result.

    We have drawn up a plan that incorporates a variety of approaches, one of which you just suggested! (Having people with Autism come and to speak to the class) It is really exciting for us that you mentioned this, because it indicates to us that we are going in the right direction with our ideas.

    Your phrase: ‘Once you’ve met one person with Autism, you’ve met one person with Autism’ is so true.

    And Laura, Thank you for your comments. We are pulling out all the stops now to ensure that the proposals we are putting together have every chance of unfolding into a genuinely effective provision that delivers long-lasting and positive results- where we feel they are so needed.

    It is always great to hear that the people with the most personal experience and knowledge feel as positive about the idea as we do.

    Everything you describe- especially the break time issues, are key to our proposed service. Part of our service is specifically dedicated to providing support during the more unstructured times of the day (like break times).

    In your opinion, if group activities had been provided at your school when you were younger, are there any particular ways you would have liked it to be organised?

    We find it especially useful asking people who have already been through the school experience and can report the changes they would like to have seen.

    Thank you for your comments about lunch time- this is something we will definitely be paying more attention to.

     

    Thank you both for all your feedback! We hope to keep this thread going so that anyone who wants to, can come and share their opinions.

     

    Abi & Cat

  • JosieB's picture

    Hi

    I think one of the major things about mainstream school and children on the HF end of autism is the environment, the noise, the class sizes etc (unless you are fortunate enough to live in an area where the population means that class sizes are smaller).  

    This situation is magnified when it comes to transition to high schools where the intake is from maybe three or four different primary schools and the sensory issues are increased tenfold.

    I would imagine that these changes impact on all children to a lesser degree and therefore I think this new move to "super schools" that we are seeing up here in Scotland was not such a bright idea.   

    Josie - Community Champion
  • Whirling Mind's picture

    I read this recently:

    Over 40% of parents of children and young people on the autism spectrum report that their children have been bullied at school, rising to 59% of children and young people with high functioning autism and Asperger syndrome.

    http://www.autism.org.uk/get-involved/campaign-for-change/education.aspx

    So basically, as high-functioning children are the ones that are by majority going to be the ones in mainstream, they are clearly getting bullied because of being integrated with NT children.

    I don't agree with integration in schools.  For a lot of reasons.  Because the staff rarely have the right knowledge to support an ASC child.  Because schools as a whole often don't deal with bullying adequately, which means that a child who already has special needs also has to suffer from bullying on top.  Because the environment in mainstream is anathema to what an ASC child needs because of sensory issues and anxiety.  Because mainstream schools focus on academics at the expense of the wellbeing of the child.  And more.

    I'm sure there are odd success stories about ASC children getting the right support and thriving in mainstream, but on the whole I think it's wrong.  I think there should be specific schools for children with HFA/AS as their needs cannot be met properly in special schools for more severely autistic children, or mainstream.

    Their disability is under-accommodated because of having average-high IQ and good verbals skills.  That doesn't mean that their other autistic traits aren't just as problematic as a lower functioning child.  And yet the expectations on them are to be entirely "normal" in school, to perform normally in the face of sensory issues and anxiety, to perform normally socially in groups and to not have their academics affected adversely.  The strain of that is substantial.

    No amount of integrating into mainstream will ever fit a square peg into a round hole. No amount of mainstream education will make you not autistic and make or even necessarily help you, to function "normally" in society when you have finished your education.

    I think the NAS should campaign for a school in every large town that caters solely for HFA/AS children.

  • CatFrizz's picture

    Yes Josie- I just did some reading on ‘super schools’ and there appear to be a lot of them in Wales too. 1000 students in one school- that’s a lot of students!

    I think that awareness of ‘sensory’ issues is increasing but even ‘awareness’ is a tricky concept. Until you’ve actually experienced the kinds of sensory distress that is often associated with Autism (or experienced caring for someone who struggles with it) it is really difficult to appreciate just how overwhelming and traumatic it can be. I really take my hat off to all people who endure sensory challenges in their everyday lives- especially those who have no way to articulate what they are experiencing.

    It would be great to see dedicated spaces in all schools, that students can use if they are experiencing sensory overload.

     

    Whirling- I think you make some very valid and thought provoking points.

    It is sad to think that so much more needs to be done before we, as a society, can really put our hands on our hearts and say, ‘we are doing enough’.

    We believe that, on the whole, you are right when you say that neither ‘Mainstream’ or ‘Special schools/ ASC units’ are fully accommodating the needs of students with HF Autism.

    And the issues that you mentioned are relevant to everybody in varying degrees:
     
    1) Staff training to support individual needs- so many students do not fulfil their potential due to a ‘one-size-fits-all’ approach
     
    2) Bullying- this is a nasty thing that that can creep its way into every area of our lives, both as children and as adults
     
    3) Losing sight of general well-being, due to heavy focus on academia- which in itself is ironic because academia/ learning will inevitably suffer if students’ well-being is compromised

    And, like you say: for individuals on the spectrum, these things are all coming ‘on top of’ an already difficult experience. Additionally, the issues you raised are often amplified for students on the spectrum.

    Your description of what is expected of students (with high functioning Autism in Mainstream schools) whilst they are already struggling to function in an often unforgiving environment, and the strain that this causes, really hits the nail on the head. Reading your words is not an easy task because so much of what you say rings true.

    As already mentioned, we agree that there are students who are slipping through the gap between ‘Specialist schools/ ASC units’ and ‘Mainstream’, with neither environment fully meeting their needs.

    However, I would argue that whilst we shouldn’t be forcing ‘a square peg into a round hole’, neither should we be accepting the solitary ‘round hole’ and leaving to build our own separate ‘square hole’.

    I would argue that if mainstream schools accept both round and square pegs, then they need to accommodate both.

    I know it is hard to believe this will materialise into a reality, but I think it is immensely important that it does.

    A mainstream education is doing ALL of its students an unforgivable disservice if it does not meet everyone’s needs. It is doing the unforgivable if it does not create a learning environment that respects all of its students.

    We believe all learning environments should be facilitating environments, allowing students to learn and fulfil their potential. A good education should teach students ‘how to learn’- and prepare them for life beyond school. If we want a fair society that does not bully and discriminate against people with Autism, then surely these attitudes need to begin in school? Schools should be teaching their students to acknowledge and respect each others’ individuality.

    Re: your comment, “No amount of mainstream education will make you not autistic and make or even necessarily help you, to function "normally" in society when you have finished your education.”

    If we went into a mainstream class and consistently pulled the chairs from underneath the students as they worked, talked loudly in their ears as they tried to listen to the teacher and shone a bright torch at their eyes whilst they tried to read, I am sure they would respond with frustration and distress- in fact, they would probably lose the ability to behave ‘normally’. So in a way, you could argue that people with Autism are simply behaving exactly the same way as neurotypical people would do in the same circumstances.

    This is something that society needs to face up to, therefore schools need to teach their students to face up to it as well.

     

    I believe you are right when you say that integration often places students with Autism under substantial strain. I also believe that this represents a disturbingly uneven distribution of the ‘strain’ caused by integration. Perhaps if schools felt some of that strain, they would understand why they need to make the necessary changes.

    The word ‘society’ means, “the state of being together with other people”. You can be ‘in’ a society, but nowhere does it state that you can own a ‘society’. That’s a dictatorship, not democracy. No individual or group should be allowed to drive others out of ‘society’. That’s pure discrimination.

    Where there is prejudice, discrimination follows. We believe schools should fight prejudice with knowledge and awareness.

    They say that the best measure of a society’s worth, is the way it treats its most vulnerable members.

    I believe this is true, but I also believe that people with Autism are not just ‘vulnerable’. People with Autism have many qualities.

    I believe a society that cannot accommodate and meet the needs of people with Autism, is a poorer society. I believe that people with Autism have a lot to teach society as a whole- Both directly and indirectly.

    Indirectly: Where would we be without the compassion and understanding we have acquired through meeting the needs of others?

    Directly: Where would we be without the Aspie brains behind our greatest inventions and discoveries?

    If society really wants to turn its back on people who are different, then I guess we will have to campaign for separate schools. But I reckon there’s still a fight to be had, before we have to tread down that path!

    Neurotypical people need people on the spectrum- let’s not abandon them yet! They just need a little more help to understand.

    Thank you so much for such thought provoking feedback. If it weren’t for people like you- who are willing to speak out, we would never be able to progress forwards. All the issues raised by everyone on this thread will feed into the development of our service.

    We welcome more comments, responses and opinions!

    Thank you again,

    Abi & Cat

  • CatFrizz's picture

    p.s. just to be clear: when i say "Neurotypical people need people on the spectrum- let’s not abandon them yet! They just need a little more help to understand."

     

    I mean, let's not abandon Neurotypical people yet- they just need a little more help to understand where thery are going wrong.

     

    Smile

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