Sunday, December 29, 2013

Autism Speaks? Ok. Now listen.

Autism Speaks is a US based organisation that presumes to speak for people with Autism and their families. I say presumes, because lately a lot of us have been wondering whether we want to be spoken for by them.
Now I live in Ireland, and I should state for the record that I have met some very nice people who work for or with Autism Speaks here and in Europe. They support conferences and research projects which I am, or might in the future consider being involved with. But I would not want to represent or be represented by the organisation in their current form.

Why? because of their "Call to Action" published in November 2013. Go HERE to read it.

While I identify as being in the Autistic Spectrum, I have managed to grow up and integrate in mainstream society while passing as a neuro-typical. So I will not respond to this as a self advocate. Read this article; for that perspective.

I am however Out and Proud as a Parent of two autistic teenagers - and that's where I took exception.

I have tried to understand the cognitive process of the author of the "Call to Action" - I have a very clever friend with a social work degree who explained where Suzanne Wright might be coming from. We should all try to be empathetic where possible. But I also think she has had 8 years to get used to Autism and perhaps adapt or adjust her views. She and the organisation her family founded have had 8 years to listen.

Autism is a journey, and what one person sees out of the window might be very different to what another sees. But to try and influence the impressions of those who are just embarking is irresponsible and potentially very harmful.

When parents like me find out about Autism, they have to have time to get used to it. They have to process the fact that they are not on the journey they imagined and time to fall in love with a different child to the one they imagined. They can do this with acceptance, encouragement, education and support.

Switching on their computer and reading: "These families are not living. They are existing. Breathing... Eating... Sleeping... Working 24/7...  This is Autism" is not going to help.

If someone had said that to me in the early days I might have walked out and jumped under a bus and my two fantastic, interesting, challenging but very very loveable and charming teenagers might have grown up without me.

Lucky for me there was no easy access to the internet and no multi-national organisation to influence me negatively in 2001. Lucky for me a special needs teacher recommended I read Tony Attwoods "Aspergers Syndrome" and I learned how to love my son who had just been diagnosed for all his quirks. I also learned how to recognise those quirks in myself, and so began my journey into Autism where I would be joined by my daughter and eventually (he took his time) my husband.
All very happy Spectrum-keteers!

So since my people think in pictures, I thought I would answer the "Call" with a picture diary that disproves the assumptions made of what Autism can and will be. It's all up to you and your attitude. And it can be a lot of work - but so can any kind of parenting. It can also be a lot of fun.
It is most definitely about love.


Me and my husband of 25 years. Still together. Still as Aspie as the day is long, but still together.



Sharing a video with my not so little girl. She is 14 and yet still likes her mother. Imagine that?



Me and my award for being Image Magazine Social Entrepreneur Business Woman of the Year 2013. Yes, I have my own socially profitable business based on 10 years of learning about Autism.


Ok, I got a 2 hour make-over from the magazine that gave me the award but please note: lines around my eyes are from laughing all the time. Do not have tragic life.


Very loveable eldest child with husband in Noodle restaurant. That's right, he can get dressed and go out to eat noodles with a fork (or chopsticks) in a public restaurant. My son can too.


Entire family on regular walk in Wicklow Hills. Again, all parties are clothed and able to walk or run through hills and glens. I am behind the camera. Also fully clothed.


Okay, she prefers her Daddy but she does actually like me too, hence the smile as I'm behind the camera. She is about to ask for chocolate, with the iPhone in that little purple purse.  


Laughing Selfie with hairy faced Autistic Teen on the "Luas" tram in South Dublin, en route to get Pizza. Out in public, on public transport and happy. 

I thought a lot about doing this post, because as I said I know some brilliant people who work directly or corroborate with Autism Speaks in Ireland and internationally and I don't think they believe the mission stated in the "Call"

I even considered working with them myself, as part of their world research into prevalence. God knows I could do with the money (we are still in deep recession in Ireland) and I think it is important for us all to be counted. But I just can't get onboard with them in this current form. So I hope they can stop speaking for just a minute, and have a listen. And learn.

We are never too old or too big to learn.

xx

Updated: You can follow both my beautiful kids via their Facebook Pages where they post pictures to share with their teachers. Liam is here: www.facebook.com/pages/Liam-Domican 

10 comments:

Petunia said...

Loving the pics and snorted while laughing at some of your captions :) I'm so glad that at the start of my journey with Munchkin I came across your blog and you guided me through the early days with your positivity and inspirational advice. Thank you darlin <3

Liz Ditz said...

Thank you for the eloquent post and sharing your lovely family with the world.

Jean said...

You have a wonderful knack for being positive, without sounding like you live in a field of daisies and smoke interesting herbal cigarettes. And holy moly but your kids are gorgeous. I'm also delighted you have a house-trained husband. XXX

Anonymous said...

Hi Lisa I am so glad I came across your blog I am just beginning this journey with my 11year old daughter and I am feeling more positive now I have read your views, I need to be surrounded by like minded people I can not entertain negativity have to stay upbeat for myself but more so for my daughter I have been advised to join a local group for support so far I have joined every site on Facebook that has the word Autism yet not ready to come out locally fell like I want to protect my daughter from all the wrong type of people who could harm her or take advantage of her I see her and me as being very vunerable at the moment ......

Matt Carey said...

Life is more challenging for autistics and their families than for non autistics. Sometimes extremely challenging.

Sadly, Mrs. Wright and many others can't describe this without resorting to despair language. It's much easier to take her path--

"These families aren't living. Life is spent moment-to-moment in fear of what may happen next"

Easy to write and easy for the casual reader to digest.

Now, try to explain in <20 words your life and that of your kids. The hard parts and the joys. The need for support.

Hard to compact into a sound-byte, isn't it? Mrs. Wright's op-ed was basically a string of sound-bytes. My guess is she truly believes in the despair rhetoric and believes she is helping by creating awareness. Perhaps someone can help her out on that.

jazzygal said...

I have not read the articles, nor do I want or need to.

Autism Speaks? No: Love, education and your pictures speaks. Volumes.
As do you, eloquently.

Happy New Year to all the Domicans :-)

xx Jazzy

suburpcomix said...

Lovely photos and great attitude.
A new blog to read :)

Lisamaree Dom said...

Thank you everyone for sharing. @Matt I tried to encapsulate how I feel with pictures. Autism is challenging but I don't think our lives are any more or less wonderful than those with supposedly typical kids, we just get there in different ways.

Everybody, at some point in their lives will probably experience either disability or caring should they be lucky enough to reach old age. It should be possible for society to provide the support that everyone needs without anyone having to be portrayed as a victim.

Anonymous, your comment made me happy to have shared my feelings. Its the newbies that I feel for the most when I read the "doom and gloom" depictions used to collect dimes or lobby politicians.

xx

Sharon Morris said...

Hello from your "smart friend" :)
Great post by the way x

Devina Divecha said...

Loved your post - you are such a positive woman, and Liam's and Grace's journey has been nothing short of inspirational, ever since I found you and your blog many years ago. Best wishes always.