Sunday, November 1, 2015

Q & A Session: November

The Autistic Family Collective submits "Q & A Session: November"

This is a summary of a Q & A session we held last night as a group. The questions were asked by group members who identify as neurotypical, autistic, or otherwise neurodivergent, but the answers were given by our autistic co-conveners.

Last night, Autistic Family Collective held a Q & A session for our group members. While we plan to do this on a monthly basis, it was fitting that the first one was held on Autistics Speaking Day. We want people to get to know us, so we’re sharing some of the questions and answers from last night’s session, and we plan on doing the same for future sessions.
This post does not contain every question asked because some of the questions and answers were of a personal nature, but we have included the questions that we felt are most valuable to people outside of our group.

Questions of a general nature
I would like to know more about the neurodiversity paradigm, and where I can get more information about this?
Our go to source of information about neurodiversity in general, and the neurodiversity paradigm more specifically is neurocosmopolitanism from Nick Walker. In addition, we also have some information on our website with links to more resources.
Can you tell me what ableist language is? I’d never heard of it until I read through your comments policy.
Ableist language is discriminatory language that expresses bigotry towards disabled people. This link from Autistic Hoya explains that in greater detail.
Questions about Autistic Family Collective as a group
I was wondering if you have any plans to help ‘re-educate’ the professionals – GPs, therapists etc. e.g. factsheets, workshops, etc.?
We have developed a set of guidelines for therapists which are available on our website. At the moment, we’re not proactively sending them to therapists because that would be costly and time-consuming; however, anyone is welcome to print them and share them as needed.
Can you tell me a bit about what you are working on with regards to your focus on the educational settings?
We are currently conducting a survey to assess the experiences of autistic children who have been bullied in educational settings. Through that, we hope to identify what works and what doesn’t in terms of existing anti-bulling policies.
Once you have the information collated regarding what works and what doesn’t in terms of the anti-bullying policies, what do you plan to do with the findings? Do you plan to present it somehow? To Government/Education Departments? Or come up with your own policies?
We’re going to prepare a report from the findings and then carefully plan out the best options in terms of presenting the findings. In addition to sharing the report within this group (because just understanding that others have experienced similar things to you, is very empowering!), we will think about approaching the media, education departments and other disability organisations. Stay tuned!

You are all putting in a lot of time, and a lot of yourselves in to this collective, and it is all on a voluntary basis which I am so grateful for, and I know you don’t expect to get paid, but do you think down the track you will be able to get some sort of funding for the group for research or special programs, projects etc.?
We’re not actively chasing funding, and definitely not intending to incorporate as an organisation, but if we can at some point, it would be good to have resources to support both the community development aspect of this work, and some very specific campaigns.
Questions specifically related to being autistic and neurodivergent
Does anyone have any thoughts on introducing neurodiversity to children – e.g. 5 year olds?
Alexandra: I have autistic children and I am raising them with the knowledge that they are autistic. I think this is important because being autistic is significant – and neurodivergence simply in naming it and understanding it, is not in itself inherently medical or clinical or pathologised. I aim for being autistic and neurodivergent to be just a part of life, no big deal in many ways, but also impacting upon life in ways we can explore and discuss.
Briannon: I would definitely tell children they are autistic from as young as possible – both that they are autistic and explain disability to them without shame. We do in our family. It is an open and ongoing conversation.
Cas: While not neurodiversity-specific, more general books to introduce the concept that difference is ok and valuable are useful. As an example, Todd Parr’s “It’s ok to be different.” Briannon also just reminded me that I have written something about this.
I love how everyone on this thread is so proud of their autistic identity. But I imagine it wasn’t always that way for everyone here. I’m wondering if anyone could comment on finding that sense of self-assurance. Will that be something the collective might touch on?
Alexandra: My own experience with loving my autistic self, is that the pathologisation of autism had a large part in my feeling like I needed fixing or feeling like I needed to work on myself in an ableist way (yes, ableist toward myself!). By rejecting the pathology paradigm of autism, and valuing neurodiversity – I moved away from that ableism that I had spent my life being taught. It is an ongoing journey for me, because there is a lot of conditioning to undo and challenge.
Briannon: I identified I was autistic after my children, and so I had come to work through my own ableism and feelings about difference and disability first.
I spent a lot of my life feeling I didn’t fit in with my peers, and not knowing my sensory or cognitive needs, and so I worked very hard and it absolutely impacted on my mental health. At least once I experienced what I would now call ‘autistic burnout’ and that was 100% from not knowing I was autistic and doing things that were completely unnatural to my needs for too long.
Being a queer woman has impacted in both positive and negative ways on my Pride, and I wrote about that last week on Respectfully Connected.
Cas: I was fortunate to discover my autistic identity later in life and it helped me make sense of my life. Going through life feeling different and having parents who were quite authoritarian damaged my self-esteem extensively, so finding my autistic identity made everything make sense to me. It helped me feel whole.

I imagine that people who have grown up with an earlier diagnosis may have very different experiences formed through their interactions with teachers and parents.
Leia: The number one thing that has influenced my ability to accept myself as an autistic person is best summed up by something Nick Walker said recently: “A label is community”. It really wasn’t until I started making connections with other autistic adults that I began to accept myself.
On the subject of books, any films or books that autistic adults feel accurately represent their experiences?
Cas: The books and films question is quite a challenging one for me to answer because there is such diversity among autistic people. I relate to what has been written by many bloggers – my personal favourites being Radical Neurodivergence Speaking and Unstrange MindI personally don’t watch many movies or much TV, but generally I find that when autistic people are being portrayed by non-autistic actors, their autistic traits are over-acted and it feels a little icky.
Leia: I would recommend two books: “Neurotribes” by Steve Silberman and “The Real Experts”, edited by Michelle Sutton (who is one of our co-convenors). That latter would be really great for non-autistic parents of autistic kids.
What are your personal opinions / experiences around the various medications often recommended for children on the spectrum?
Briannon: My personal opinion (not as convenor or admin): I would never medicate to make my children change to fit in. I have had to proactively resist paediatricians wanting to give my children scripts as a first resort. The best ‘autism therapy’ we have had has been radically reducing people and sensory pressures, unschooling, moving to a quiet location, and getting really good at saying No. 

Change the world for my kids, not my kids for the world. 

That said, we do use medication in this house, for sleep (and would consider for other reasons in the future if needed). One of the ways I support my children is to talk to them about what it is and how it works and help them learn about their bodies and how medication impacts it so they are building skills to be informed consumers of health services & pharmaceuticals.
Cas: This represents my personal opinion on medicating *for* autism, but please note that I do think medication can be useful when it is aimed at improving quality of life, rather than trying to reduce autistic behaviours.
Leia: In my experience of talking about medication for autistic kids with quite a few autistic adults, I think I would say that most of us believe that it is a last resort, when all other methods have been explored.

We would like to thank all of our group members who participated in the session, and we hope that people who read this will be able to develop a better understanding of the values and purpose of Autistic Family Collective.
We look forward to presenting you with another summary of our Q & A session next month.

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