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We Must All Live Truthfully

We Must All Live Truthfully

Last updated on: April 30, 2016 at 1:49 pm by Dilshad Ali

We Must All Live Truthfully 2016-04-30T13:49:44-04:00 Dilshad Ali

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Ali Family Autism Truths #30 – April 30, 2016

I read an article in the other day about prenatal testing, about a family of two scientist-parents who invented a machine that could sequence and separate genes to better and earlier tell if an unborn baby would have Downs Syndrome or a host of other disabilities.

The article was titled, “How A Prenatal Test is Transforming Modern Medicine.” One of the main scientists interviewed in the piece, who has an adult son with Downs, said that after everything she has gone through in her work and with her son, if she had the choice now that she wasn’t given decades ago – to know that her baby would turn out to have Downs – she would’ve aborted.

It was admittedly selfish, she said, but look at everything she was able to accomplish through her work, and look at the very basic life her son lives to this day.

In my mind, this question is a moot point – if I knew my baby was going to be born with, say autism, what would I have done? I asked my husband that yesterday, and we both immediately said the same thing:

Nothing.

I don’t mean this to be a tirade against prenatal testing or the what the scientist and mother said in that article. I just want to leave you with a few thoughts as we close out April and Autism Awareness/Action/Acceptance month. A few parting truths, if you would have them. Because autism doesn’t end because the month does. Tomorrow will come, and D will still be autistic, and I will still be his mother.

The latter I wouldn’t change for anything.

The former, well, that’s one of those complicated, messy, depending-on-the-day things best left unspoken in the pages of this blog. The truth is, it really doesn’t matter, because what is, is.

What matters is the life we are helping D to build, the parenting we are doing, the ways in which D is teaching us and everyone to be more compassionate, more open, more honest with ourselves, more accepting of the world.

The truth is we are not meant to be a homogenous global community of perfect health, neurotypical abilities and equality across all social, political and economical landscapes.

We are meant to be different – differently made, differently living, differently hoping, differently praying, differently living, differently loving, differently falling and differently rising.

The truth is, autism is a word that is too complicated, too evolving, too painful and too life-changing to encapsulate into a few measly hundred, thousand or even a million words. Is it person with autism or autistic person? Is autism a “neurodiverse” diagnosis to be celebrated – I am happy and perfect just the way I am and you should not try and change me – or is it a medical diagnosis for which we search for underlying causes and cures or ways to mitigate the medical comorbidities?

Is it an epidemic or is it not (because it’s better diagnosing)?

Those debates matter, yes, and must continue to be discussed and explored.

But what matters in the here and the now to our family is D and his wellbeing, happiness, his future, security, health, dignity and rights. What matters is our collective responsibility to be more open, accepting, supportive and compassionate in our living with each other. What matters is not just D and others autistic individuals learning to live in a difficult world, but that world changing itself for those on the spectrum and those living with other disabilities and challenges.

What matters is that it’s ok. It’s ok to admit when things are hard. It’s ok to demand better living from each other. It’s ok to fall short and it’s ok to wake up in the morning and try and rise again. If you’re a person of faith, t’s ok to curse God for that which you don’t understand, and it’s ok to come back to Him and humbly say – please show me how to be better. Please show me how to help my son. Please show me the way forward. Please make it easier.

Those are the truths I’ve learned on this journey with D. Those are the truths our family hold on to.

Autism Awareness/Acceptance/Action month ends today.

But autism does not.

Not for D. Not for those who love him. Not for the millions of autistic kids, teens and adults and their families. Their truths continue tomorrow and all the days after that.

And so we all must live – truthfully.

Autism Awareness Month 2016

Ali Family Autism Truths

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