Get with the program. Autism Acceptance Now

A Sean Mulligan Original



Last week TEDx Dublin uploaded a video of my talk which I shared here

and all weekend, in fact every since I sat down to write the script for the talk I have been thinking about how far we have come with Autism Acceptance.


As in.. not that bloody far at all.

Ok, thanks to some pop stars, some playboy models, some films starring Dustin Hoffman and Clare Danes we are all becoming a lot more aware of Autism. Well some people are. There is still a tabloid driven population that persists in thinking it is just bad parenting but I will ignore them.

So yeah, we all know about this Autism thing, but we have such a long way to go with acceptance.

And I am not just talking about the WOEFUL reaction to diagnosis, provision of services and recognition of the need for fully funded evidence based interventions. None of which have changed in the 13 years I have been doing this job. (it took me 3 years to realise my son has autism)


I am talking about their significant care-givers!

I am a member of a lot of parent chat and support groups. While I have sworn off attending any such thing in person, I do get added to these groups on line and often find myself responding to the queries.

I have never been the sort to type (((hugs hun))) after an online post about how difficult someone is finding their life with autism. I am totally in sympathy, I have been there as you well know!

But I tend to give practical advice where I have it. I'm sorry if that demonstrates a lack of empathy or sympathy (which?) but I think if I know what might help, then I have a responsibility to share it. I've always done this, it's why I have a blog.

But then I see the same people complaining about the same thing and I think, in my very matter of fact aspergers way "why didn't they do what I said last time?"

(this is the logical response, and my brain is logical)

Well a very honest Mum responded to one of my suggestions the other day and it really gave me pause for thought.

She said:

Haven't quite let go of the "we will be a family doing family things" I know I'm 90% there, 
I know the kids have completely different interests. Head knows it, heart needs to catch up.


And it really got ME thinking. We talk a lot about lack of empathy in Autism world. In the sense of deficit. It doesn't come naturally to most autistic people as it requires imagining how someone else is thinking.

Well my friend's comment helped me put myself in her place. It helped me to stop mentally jumping up and down screaming at her to change the way she does things, and to realise what a leap she had taken.

But it doesn't stop me thinking that she needs to be helped to move the rest of the way.

I have another friend who came to the Autism party late. She was already a special needs parent but this involved a very very different disability.

And again, when she says something that I find infuriatingly obvious, I have to remind myself that she doesn't have the same breadth of experience in Autism culture that I have. (my theory of mind fail yet again)

It's like when my husband first emigrated to Australia, and he used to come home and tell me things he had learned, like: "Did you know they have pubs here with an off-licence that you can DRIVE YOUR CAR THROUGH??!!"

and I would go, "um, yeah, I was born here."

But this doesn't mean I am letting my friends off the hook when it comes to acceptance and adaptation.

And yes, when they refuse to change, I do judge them. Sorry.

Because the people they are parenting need them to change.

Autism is about seeing, feeling, tasting, hearing, balancing, planning and moving around the world very differently. So why shouldn't we build a few ramps of extra support?

So my message to my friend who asked if she should have to use positive behaviour supports for "doing what they should be doing anyway?"

was: YES! because he has spent his whole life up to this point compensating for the challenges of autism and it is only now that it is noticeable.



If you have ever been pregnant, it is a little bit like that moment when your tummy muscles, and sometimes your pants just give up and go "POP!" and let that growing uterus have all the space.
You go from being just a bit round, to being someone who looks obviously like you have a bun in the oven.


And it can be quite a relief. There is no hiding it, you can go right ahead and buy those comfy pants with the stretchy panel and start eating cake off a plate balanced on your belly with dignity.

(you can no longer fit into your skinny jeans, but don't worry, eventually you will find a pair that stretch and look good)

So please Autism Mums and Dads, please please please get on board. Stop forcing your little Auties (and bigger Aspies who flew under the radar for longer) to live in your world all the time.

Give them a place of sanctuary. Build them walls of visual supports and mind maps, positive behaviour supports.
Give them a place for their stims (if they do no harm) and a time when it is perfectly okay to indulge, on a regular basis.

Embrace Obsessions!! too often I see parents, particularly parents who are involved in intensive intervention withdraw and ban obsessions. This is cruel and unnecessary.

One of the most useful principles of ABA is PAIRING! in other words you use obsessions to connect, to adapt and tailor what a person needs to learn to be something they are interested in. Use YOUR imagination and become part of their obsession. Nurture it.

But most of all, ACCEPT autism.

Some of the worst damage in autism *treatments* is done when parents and care givers buy into a cure mentality. That any intervention is going to make autism go away leaving you with a perfect child that you can start loving.

The child you have is the one you will always have. They deserve your love from the get-go. They deserve respect for who they are as an individual. Yes, they are going to need a bit more support but that support should always be aimed at improving their quality of life and ability to live with dignity, even after you are gone.

If you are not on board with that yet, hurry up. Your kid needs you.

xx


Acceptance did not come easily to the Domicans either. My husband talks about it at 8:0 minutes in this clip from a documentary.



Ways to get on board:

Read: The Reason I Jump

Watch:
Snow Cake 
Temple Grandin
Extremely Loud and Incredibly Close
Barfi!

Download: Visual Supports for Visual Thinkers 


Like: Sean Mulligan's Facebook Page

*updated to include Sean's Infinite Possibilities Symbol - created for me!

Comments

Anonymous said…
Very well put Lisa, as always. I've always read your blog and your online posts on good ole RC and later FB from when I started down this path 6 years ago, and I have always respected your advice and opinions, coming from one with as much experience as you. There were lots of times when I knew you had to be right, but I wasn't at the point where I could fully accept that you were right. It's like putting an old head on young shoulders; you have to travel the journey and discover some things through first-hand experience before you start to believe and accept. Six years down the line, I can now say that I have given up trying to cure my litte boy, trying to reduce his obsessions and trying to make him fit in. And I am now more madly, deeply in love with him than ever because I can finally see the wood for the trees and can see what a truly amazing and beautiful human being he is. And now I can look back on your advice and say you are so totally right and wish that I hadn't wasted as much time on stupid stuff. But like I said, that'd be like putting an old head on young shoulders. Now I've got older shoulders and an old head to match ;-) Laurie
Jodi Hill said…
Love this!!!
jazzygal said…
I do understand the inclination to make the children conform, especially in mainstream. But I also believe we need to give lots of wriggle room. We need to find the middle ground.

We're lucky because if we give our children the time to assimilate the words they CAN verbalise how they feel ....and sometimes hearing that (not just listening to it) can be very, very enlightening.

xx Jazzy

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