Autism Is Not My Agenda.

April is Autism Awareness month, and to be frank, it has been making me feel uncomfortable.

My daughter has autism. So this should be my ‘thing’, right? Hooray, a whole month to raise ‘awareness’ about autism. World Autism Awareness Day was on April the 2nd. Everyone was encouraged to wear blue, landmarks around the world were lit up in blue lights, to raise ‘awareness’. The Sydney Opera House was lit up in blue, at cost of around $40,000.

At the same time, I started coming across articles and blog posts that disparaged the organisation that was running the “Light It Up Blue” campaign. Arguments that the money raised wasn’t used appropriately, that there is actually very little input from the ‘autistic community’. Suggestions that the ‘puzzle piece’ used in the organisations logo is offensive.

What does this all mean? I don’t know. And the more I thought about it, the more I realised that it really doesn’t matter. Not to me, my family, my daughter.

To be blunt, I don’t give a shit about anyones agenda. I am not an advocate for autism, I am an advocate for Milla.  I don’t have time to argue about politics; who runs what organisations and why. I am too busy fighting for Milla. I don’t care about the supposed conspiracies of the government and the pharmaceutical companies, the arguments for and against immunisations. I care about Milla, her life, her future. Milla is my agenda, not autism.

The only thing I will say about Autism Awareness month, is that wearing blue, posting quotes on facebook etc are great at raising ‘awareness’ of autism, but awareness is not the same as ‘understanding’. I think most people are aware of autism, but there is still a long way to go to reach understanding. This post from Stuart Duncan explains autism in plain English, and Kate wrote this post about Three Things You Should Know About Autism. Alternatively, if you want to understand Milla better, ask me questions. If you know someone who’s child is on the spectrum, ask them questions about their child.

Being aware of something will never change the world, but understanding it just might.

18 comments on “Autism Is Not My Agenda.

  • Elephant's Child , Direct link to comment

    Thank you.
    Understanding is indeed the key. For autism and so many other things. I would prefer that people didn’t climb onto bandwagons, wear coloured ribbons and the like unless they do have that magical understanding. And non judgemental attitude as well.

    That is a spectacular photo of Mila and that HUGE tree.

  • Neen , Direct link to comment

    I do really like this post. I guess when people want to access services to help them with developing their strategies and building support networks they may come across some things that don’t quite ‘sit right’ with them such as the puzzle piece for example however for others, some may not bat an eye at it at all. I have found with my little group that I’ve been establishing that it is awfully hard to please the whole group, kids and parents, and ultimately decisions have to be made and in the end people may find that perhaps that organisation/group is not for them.
    I think Autism awareness is good because to be honest if I hadn’t learnt of it through my primary school teaching, I probably wouldn’t know much about it at all and I bet there are a lot of people out there who don’t, I think my partner for one wouldn’t have a clue (but I will clue him up on it lol). I guess the ‘awareness’ month gets people talking about it and hopefully encourages people going through their experiences too to talk about it openly. Some people keep their challenges close to heart and aren’t open at all, and may feel uncomfortable being asked questions. Perhaps autism awareness can encourage those to tell their story and thus create some more understanding. Some people want to talk about it all the time. I totally agree, the next step after awareness is understanding. I can’t stand tokenistic stuff. I really love the sharing of blog posts telling personal stories (like this). Just hoping a few people have a read spreads the ‘understanding’ a little bit further. Another good thing about Autism awareness month I think is perhaps giving organisations a good opportunity to promote their services so that newly diagnosed parents and adults can become aware of orgs they may like to access.
    I hope you are still blogging in years to come because I’m so interested in your perspective and seeing if and how ideas, strategies, perspectives may change over years and watching Milla grow. And yes my gosh that is an absolutely gorgeous photograph of her! Did you take it?

    • Hesitant Housewife , Direct link to comment

      You are right, getting people talking is definitely the first step in learning/understanding. I think it’s wonderful that in this day and age, there are so many blogs around that can help people get an understanding of what life is actually like for families dealing with children on the spectrum.
      I love this picture too, it was a bit of a fluke, I just snapped it on my iPhone! ;) xx

  • Twinkle in the Eye , Direct link to comment

    You are so right, awareness is not understanding and autism is a complex thing to understand. You have your priorities right where they should be. That is also the most beautiful photo xo

  • Becc , Direct link to comment

    I agree with you. I don’t think anyone can understand unless they are living with autism. I have friends with kids on the autism spectrum but could never comprehend what it is like to live day in, day out.
    I am very aware of it and have read countless stories and blogs on the subject to gain an understanding of it, but the fact still remains. Similar to my time with depression, people were aware of it, but understanding was a different matter (no matter how hard they tried).
    I like that your an advocate for your daughter rather than trying to jump on a bandwagon :)
    Becc @ Take Charge Now

    • Hesitant Housewife , Direct link to comment

      Thanks Becc. I agree, it’s so difficult to fully understand until you are living it. I have worked with children on the spectrum before, when I worked in early childhood services, but actually living it day in and day out is completely different. xx

  • Kim@FallingFaceFirst , Direct link to comment

    I love this post, and I absolutely agree with you. I’m not sure how useful ‘awareness’ is in the absence of understanding. I feel very much the same way you do about Milla, in the context of Little L and her diabetes. I’m not out there fighting the battle against the disease in the community – I’m just fighting her battle at home.

    That said though, I do try to fundraise whatever I can because, MAN a cure would be awesome. And I suppose awareness does go some way in the community towards helping donations? It’s incredibly expensive funding early intervention from what I understand, and all paid for privately, by the families? I wonder if these types of community events might help to at least ease some of the financial burden in the future, so maybe at some point it won’t be something that families need to bear the weight of alone.
    Obviously I’m not at all informed on this, in the way that you would be, but I also know that I don’t have the energy to get out there and do all that stuff when I’m so busy keeping things right for her at home. Maybe in the future when things ease up my perspective will change. xxx

  • Rhian @melbs , Direct link to comment

    It sounds to me like you have your priorities bang on. Your number one is Milla, and thats the only thing that should matter not all the ifs buts and maybes surrounding the campaign. That is a really beautiful picture, she is a little gorgeball. :-)

      • Lele , Direct link to comment

        Le problème des photos sur le , c’est qu’on ne sait jamais quand les gens vont passer devant nous, s’ils ont maintenant leur rythme, accélérer ou au contraire connu une dÃcfaillan©e… et si on arrivera à les repérer dans la foule… Du coup, même lorsqu’il s’agit de photographier ma mère, mon frère, etc… C’était très souvent une surprise de les voir passer….

    • http://www./ , Direct link to comment

      I’m really enjoying the style and layout of your website. It’s an incredibly easy around the eyes so that it is much nicer for me to come here and visit more regularly. Did an individual hire out and about a designer to make your theme? Exceptional work!

    • http://www./ , Direct link to comment

      //AND YET THE SOLUTION TO EVERYTHINGIS MORE RELIANCE ON REGULATORS:////Quoi qu’il en soit, ”kudos” à Rolling Stone, qui vient aussi de réaliser un super-coup à propos de la marée noire, en montrant de l’intérieur la déliquescence du service de contrôle des plateformes (Minerals Management Service) après la dérégulation sous Bush-Cheney.//

  • Maddy (@mummawoosah) , Direct link to comment

    I was really touched by your honesty and love for your Milla. I especially liked your comment about other’s agenda when you’re right, at the end of the day, all we really SHOULD be caring about is our own.

    It’s sad how ‘awareness’ often turns ‘faddy’ (sorry can’t think of a better word right now) but when it is a cause very true to your heard (in my case breast cancer (my mother-in-law a survivor), bowel cancer (both my darling daddy and grandfather sadly lost their battles) and my own personal crusade to bring more awareness to Post -natal depression….agendas and priorities do shift.

    Thank you for sharing your gorgeous story (and pic!) of Milla xx

    -visiting from FYBF With Some Grace

  • Twitchy , Direct link to comment

    That photo is utterly divine!
    I’m an autism mum too and agree with much of what you say. However when it comes to schools and funding we have to shout our collective heads off this election year, because all the public awareness in the world is not going to give us the places and supports to educate our kids. With disparities across states and so many kids who fall between mainstream and special schooling just muddling through in stressful surroundings with minimal help I can’t stress enough how that would take a load off all of us. … I mean with all the home days I can’t even go to work and my son is now in High School.

  • Shari , Direct link to comment

    I love your priorities!! I’m teaching in the Special Education Unit this year (and it’s hard work!) and I’m loving working with the kids on the autism spectrum. I guess though, that awareness is at least a start … hopefully understanding will come sooner through campaigns such as this.
    PS. STUNNING photo of your gorgeous Milla!

  • lynda , Direct link to comment

    totally agree, i have a boy with autism and its bloody hard, unless you go through it people have no idea how hard/frustrating/sad but REWARDING it is. I cry at the meltdowns and the struggles and no sleep but i cry more at the achievements and how proud he makes me as we are doing everything we can to help him, people do need to be educated about it but i also focus on my son and anything/everything we can do to help makes his life easier. he is only in pep but i worry for his future, thats why understanding is important and that every child is different

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