Autism-friendly, inclusive or not so much

This article views inclusion through the lens of Autism conference and events and then draws out she thoughts on what is inclusion.

I speak at quite a few Autism events and conferences. It is quite popular for organisations now to ask Autistic speakers and experts to give presentations at events. This is a great thing and certainly a step in the right direction. when an Autistic speaker was rare and if they were speaking it would most likely be seen as ‘colour and light;’ rather than substance. As well as Autistic speakers, conferences are also attended by other Autistic people with a variety of perspectives – some are parents, some are professionals and some are there to gain insights for their own lives.

A conference is often by nature not very autism friendly and inclusive. There are usually hundreds of attendees, many talks going on in different rooms which may be hard to locate, big, unfamiliar venues, lunch and morning tea options which may or may not be appropriate, and ‘social’ events like cocktail parties which can be decidedly autism unfriendly.  Also, a lot of people travel to conferences and I can attest that airports, planes and hotels are often quite stressful environments with sensory overload and stress combined.  For Autistic conference delegates, the event may induce stress and even meltdowns. There are usually chill out rooms at Autism specific events but these are not always what they promise to be. I remember one event where I went into the chill out room for a bt of space before my talk and was confronted with about thirty little kids practicing for a dance recital! Needless to say, it wasn’t a very ‘quiet’ quiet room.

Basically what these sorts of experiences tell me is that there is a lot of goodwill around inclusiveness but sometimes it is not realised and becomes disappointing and frustrating  for Autistic delegates and speakers. I think often the intent behind the inclusiveness of events is good but it is not followed through very well. I get quite upset when a conference which should have been an engaging an productive event actually turns into a big stress which requires a lot of psychological maintenance afterwards to ensure I am OK.

I had dinner last night with the CEO of an Autism organisation. We had a great conversation. I am going to be a keynote speaker at this organisation’s conference later in the year, The organisation is actively promoting inclusion at the conference. Autistic advocates are involved in all stages of the planning of the conference. Sensory issues are being considered with a view to making sure people don’t struggle to take in the presentations or suffer due to bright lights or off-putting and distressing sounds. The CEO and I discussed the conference and the preference many organsiations have to book Autistic speakers for their events. We agreed that there is a long way to go but that things do appear to be improving,

These considerations around inclusiveness are reflected throughout society. A lot of lip service is paid to respect and diversity but sometimes that does not translate into actual inclusion. Inclusion is a complex beast – different people think it means different things and it can in fact it often does mean different things for different people.

Genuine inclusiveness has at its core respect for the individual who may be ‘different’ or ‘other’. I have a friend who asked me once ‘what is offensive?’ I thought about this for a bit and concluded that what is offensive is what is intended to cause offence. People may say inappropriate things without meaning to offend – I come across that all the time. I see these experiences as are an opportunity to educate the person. Bu there is a huge distance between inclusion and prejudice.  It is one thing not to offend but another entirely to include others in decision-making and social life. I sometimes think that some people and organisations see inclusion as simply a lack of prejudice but that seems wrong to me. A lack of prejudice is an absence of something whereas inclusion is a positive, conscious choice. A person or organisation chooses to be inclusive. It is proactive and decisive.

So what we need to do is not just fight prejudice but also promote active inclusion

I will be interested to see how people react to the ‘inclusive’ conference I am speaking at later in the year. I hope it is genuinely inclusive. If it is then it will be a great example for other organisations to  follow. If not, I suppose it will be a learning experience. Just as when any idea or activity is put into the world, the experience and time will tell whether it was inclusive or whether it missed the mark. If something doesn’t work, there is an opportunity to put into practice learnings from the failure

An just to conclude, here are some reflections on the concept of inclusion:

  • Inclusion is essentially about people form different demographics and backgrounds being included. This relates to decisions around your life, having your viewpoint taken on board, being respected the same way other people are respected and being free from prejudice and hate.
  • Inclusion is not only for verbal Autistic people and / or those with a high IQ. Inclusion is for everyone. For people who are non-verbal, a pretty fundamental part of inclusion is getting them a means to communicate. Once someone can communicate their needs, those needs can be respected.
  • There are different types of inclusion – in employment, in expressing oneself, in education, relationships and social connections, in housing and accommodation, in civic life and government and many others.
  • Inclusion is not just about big picture, social inclusion. Individual relationships and interactions can also be inclusive, or not. Bullying is a form of exclusion which can lead to other kinds of exclusion.
  • Everyone deserves to be included. It is not an optional extra but a vital part of being human.
  • Every single person has a stake and a responsibility in inclusion. An inclusive society is better for everyone.

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3 thoughts on “Autism-friendly, inclusive or not so much

  1. When they speak of “inclusion” in the educational system in the united states they are talking about including a child that is not typical and more than likely one with an IEP and special education teacher overseeing that IEP. Inclusion in a classroom wholly by a student all day every day from this situation is strictly dependent on the child him/herself… whether he or she can succeed in that room with certain educational supports in place that are specifically needed for him/her as well as possibly other adjustments to the assignments/curriculum for the child if needed. Other inclusion situations can be a student spending part time with in the regular educational classroom, during specific educational lessons and topics in which the student excells at and then part time in a more structured room where more of his/her needs are met. some children can do fine in inclusion classrooms if they has a personal assistant/one-one working with them in the classroom. And of course a few more varieties of this sort of situation in a regular education classroom depending on the abilities of the child and the adaptions/special supports in place. One huge problem with this type of inclusion in a regular classroom, sadly to say, is THE TEACHER. there are very few regular education teachers who “get” autism or other things necessary to make things go smoothly and they can make what could be a great educational experience for a child in this situation , into a horrific one!!!!!! the teacher has to be the right one for the child or it will not work. besides, these sorts of inclusion practices, there are other ideas that i used that i loved and worked very very well for many of my students who were both verbal and non verbal in the seattle school district, and I called it blending..but its actually inclusion… All of my students were in regular gym, and music, and lunch and recess, and art with their peers and one of my educational assistants, I also went a step further and worked with the third grade teachers who had 30 + students in each of their rooms, (one gifted room, one reg. ed room, my spec ed room ). I had ten children total. so instead of those teachers teaching science to 30 kids …we split all the classes into three mixed groups of 23 or so. each teacher was given an educational assistant and parents to work in those classrooms and my classrooms during the teaching of science. we each taught a different science topic and then after each group was done learning their specified topic, we rotated classes between the three of us and by the end of the year all the kids got to learn all three topics with a mixed integrated group of kids of all kinds. We did the same with social studies…. oh…also every fieldtrip we were included to go on with these classes. the next year, since all the children moved up a grade, i stayed with this particular class of students and did the same with the 4th grade teachers….the the fifth grade teachers.. there was such wonderful bonds created for all the students involved. it was amazingly beautiful and not negative at all. I’d see those kids at recess, run and ask one of my students to join them in kickball etc. they even went through graduation ceremony together and each child picked another child to read a small speech about the person they had been chosen or chose before they were given there diplomas and omg the typical kids speeches brought tears to the teachers eyes because they were so amazing and talking about the gifts and wonderful things about my students that they would not have known had we not done this with them.

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  2. When they speak of “inclusion” in the educational system in the united states they are talking about including a child that is not typical and more than likely one with an IEP and special education teacher overseeing that IEP. Inclusion in a classroom wholly by a student all day every day from this situation is strictly dependent on the child him/herself… whether he or she can succeed in that room with certain educational supports in place that are specifically needed for him/her as well as possibly other adjustments to the assignments/curriculum for the child if needed. Other inclusion situations can be a student spending part time with in the regular educational classroom, during specific educational lessons and topics in which the student excells at and then part time in a more structured room where more of his/her needs are met. some children can do fine in inclusion classrooms if they has a personal assistant/one-one working with them in the classroom. And of course a few more varieties of this sort of situation in a regular education classroom depending on the abilities of the child and the adaptions/special supports in place. One huge problem with this type of inclusion in a regular classroom, sadly to say, is THE TEACHER. there are very few regular education teachers who “get” autism or other things necessary to make things go smoothly and they can make what could be a great educational experience for a child in this situation , into a horrific one!!!!!! the teacher has to be the right one for the child or it will not work. besides, these sorts of inclusion practices, there are other ideas that i used that i loved and worked very very well for many of my students who were both verbal and non verbal in the seattle school district, and I called it blending..but its actually inclusion… All of my students were in regular gym, and music, and lunch and recess, and art with their peers and one of my educational assistants, I also went a step further and worked with the third grade teachers who had 30 + students in each of their rooms, (one gifted room, one reg. ed room, my spec ed room ). I had ten children total. so instead of those teachers teaching science to 30 kids …we split all the classes into three mixed groups of 23 or so. each teacher was given an educational assistant and parents to work in those classrooms and my classrooms during the teaching of science. we each taught a different science topic and then after each group was done learning their specified topic, we rotated classes between the three of us and by the end of the year all the kids got to learn all three topics with a mixed integrated group of kids of all kinds. We did the same with social studies…. oh…also every fieldtrip we were included to go on with these classes. the next year, since all the children moved up a grade, i stayed with this particular class of students and did the same with the 4th grade teachers….the the fifth grade teachers.. there was such wonderful bonds created for all the students involved. it was amazingly beautiful and not negative at all. I’d see those kids at recess, run and ask one of my students to join them in kickball etc. they even went through graduation ceremony together and each child picked another child to read a small speech about the person they had been chosen or chose before they were given there diplomas and omg the typical kids speeches brought tears to the teachers eyes because they were so amazing and talking about the gifts and wonderful things about my students that they would not have known had we not done this with them.

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  3. Oh my word! I hear you!

    I asked my son’s primary teachers (he is now in yr 8) recently if they ever suspected Asperger’s/mild ASD. They replied with an emphatic yes. I asked why they never told me. Their response was that I seemed defensive. Umm…yeah.

    There was never ANY utterance of the words ‘Asperger’s’, ‘autism’ or such linked concept to make me think they were hinting at it. I just wanted to scream at them and tell them they had been speaking with a mum who is most probably on the spectrum!!! I don’t need hints; I need direct, confronting speech. The fact I laughed at my son’s antics should have alerted them. But no.

    People say how open, inclusive and caring they are. Really??! I get shunted to the not-wanted-pile by these same people. It is akin to your point about conferences not being ASD friendly. They are talking about us, not with us.

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