You may have noticed that I’ve been a little quiet of late when it comes to talking about my son with autism. Initially I found it helpful to write about him often.
I think it helped me process what has been going on for the past year since Giovanni, 8, was finally diagnosed Autism Spectrum Disorder (ASD). I was overwhelmed by all of the support and the helpful information I received.
Then, it started to turn.
Don’t say you have an “autistic son”. Say you have “a child with autism”.
His autism isn’t him, Jo. He’s still a person. He just happens to have autism.
You probably shouldn’t tell everyone your son has autism. What will happen when he tries to find a job in the future and the Google him and find out?
Don’t say he has “mild” autism, say “high-functioning”.
You are taking away your son’s dignity by discussing his autism.
People with disabilities don’t need their parents speaking for them. This isn’t your story to tell!
So I stopped talking about him. I needed time to take all of the feedback into consideration. The people sending me the feedback were in the autism community. Some had autism and other disabilities. I didn't want to do the wrong thing by my son. Of course not.
Still, I was aware that I had been struggling with Giovanni's diagnosis since my suspicions were first confirmed that he had ASD, three years of suspicion. However I wasn't struggling because I was distressed by the news. Not all all.
I love my son, just as he is, I was just in a panic about how best to help him reach his full potential. I felt unqualified to make all of these important decisions about his care. What did I know about ASD? What if I didn't do everything right and made him worse?
Then this week I was reminded of Waleed Aly from The Project and his decision to talk about his his nine-year-old son Zayd who was diagnosed with ASD in 2011.
At first he and wife Susan Carland weren't sure whether they should talk about it at all, feeling that it wasn't their story to tell. Then he joined The Project and a story about autism came up.
“I’d decided I wasn’t going to talk publicly about it partly because I thought it was his call," Aly explained. "We did a story (on the Project) and that was the moment the seal was broken. It was like, 'OK, well, I can talk about the topic'."
One of the motivating factors behind their decision to speak about their son's autism was to help break down the stigma that still exists around autism. His message about the importance of early dignosis and therefore early intervention was also important.
“He’s a lovely little man, and it’s lovely watching him grow through all these things,” he said. “Because of the early diagnosis, he was able to get the support he needed. He’s just coming on in leaps and bounds.”
From the beginning I have felt compelled to share my son's journey, and my journey as an autism mum because it really bugged me how everyone was happy to loudly discuss my other son's food allergies but all of the conversations about Giovanni's autism were whispered.
As though it was something to be ashamed of.
Channing Tatum was interviewed by reporter Carly Fleischmann whose autism makes communication difficult, still she finds a way and the results are awesome.
That's what really upset me about the accusation that I was taking my "disabled" son's "dignity" away by discussing it, that it wasn't my story to tell, that it should be a secret.
Except it is my story to tell. I'm his full-time carer. It is my journey too and the people I have met since opening up about it have helped me immensely. I like to think I have helped them as well. The suggestion that I was violating my son's dignity by discussing his autism really hurt though. Was I telling a story that wasn't mine to tell? I was also upset by the use of the word "disability". From my experience, high-functioning autism is anything but a disability.
It was also striking how nobody ever accused me of removing my other son's dignity by talking about his food allergies. The stigma surrounding autism might be breaking down but there is still work to be done.
I know parents who refuse to have their children assessed for fear they will be given the label "autistic", as though it is something to be ashamed of. Aly made an important point. His son was diagnosed early and received early intervention.
That is key.
If you have any suspicion whatsoever, get your child assessed now and get started on whatever intervention is recommended.
That's what I wish I had done.
The stigma surrounding autism still exists, but Aly is right, it is starting to break down and the more autism parents talk about their children, the more it will be broken down.
By the way, I don't feel my son is disabled. The best way I have heard it described is that he has a different "processing system", like a computer. His language is visual. He learns visually.
He's gifted in so many ways and struggles in so many ways. Don't we all?
I don't need to force him to fit into the word. I have to show him those parts of the world that fit him.
Giovanni wants to be a surgeon. He wants to live on a farm with lots of animals. He wants lots of time to relax at home. He never likes to be without chocolate ice-cream. He gives the best hugs. He seeks assurance whenever there is a loud noise he doesn't understand but screeches like a banshee whenever he is playing X-Box.
He'll find his place in the world, of that I have no doubt but the important thing is that he gets to choose how he wants to live, he gets to do what makes him happy.
The best piece of advice I received was from someone who is an adult with autism. She assured me the almost $2000 I had spent trying to get Giovanni to eat "normally" was wasted. "I'm an adult living with autism and I am STILL picky about my food."
"Accept Giovanni for who he is. Stop trying to change him."
I wasn't ready to hear that at first, still panicking about not making the right decisions for him, but she is totally right. The first step is for me to accept Giovanni for who he is, then to help him accept himself, then his loved ones, then the world.
I feel hopeful for his future and for the future of all children with autism and I know that by being open about our children's diagnosis parents like Aly and I are helping to further break down that stigma, and one day it may not even exist.
Top Comments
I've come back to this article a few times trying to figure out how to put into words my feelings on this, and I still don't think I am going to hit the nail on the head, but I wanted to try because I know you care about your little guy, and putting yourself out there on something so close to your heart is something that deserves someone responding.
It's a tough road you are on at the moment, but there is light at the end of the tunnel - your little guy is magic and getting to be around him will sometimes be tough, but the big moments are earth-shatteringly huge in their sheer joy, even though they are less frequent than you might have anticipated when your little guy was more little.
As someone 'in the community' I still have an issue with the way you are writing about your son's ASD though in that he is so readily identifiable as you have named him and shown photos of him. I have a problem with ANYONE posting things about their kids before they are able to make informed decisions on it, and a child with ASD is even less capable of making that choice. And ultimately this is something that should be his choice.
I appreciate that as a parent who has had so much of their day to day life affected by the non-typical-ness of your family that there are days you want to scream out to the world that even though it looks like you haven't achieved much you have been working your tail off and had your heart repeatedly ripped to shreds. You want to reach out and make contact, and also prove your worth to the world because, dammit, some days you have just worked so darn hard! The thing is that there are ways of doing that without putting your son's story (and yes it is HIS story first and foremost, not yours) out there for the world. There are 'private' forums where you can talk to other parents, without giving away your son's (and yours) identity, there are your own family and friends, and plenty of other organisations out there to talk to. You don't have to post about it in completely open places like this for your experience to be valid.
I think something we have forgotten about it in todays society that is absolutely tsunami-ed with social media, is that if something is not on the net it can still be valid. If a tree falls in the forest, so to speak, it still happens. People seem to be astounded that someone can let a child's birthday go by without an adoring social media post. That a child can be born without a social media announcement. That a new job can happen without an accompanying post.
Your experience is no less valid and important if it is not written about with every identifying detail. Your son has a right to his own digital footprint, and when he is old enough it will be really interesting to hear what he has to say about his own experiences - as a parent desperate to hear how my child might turn out it was always the older ASD individual (the adult, teenager etc) that I was most interested in hearing from rather than the parents. And when I was interested in hearing from the parents, I didn't need to know exactly who they or their child were.
The other thing that is important is that in the first few months/ years after falling into this community you will probably make mistakes (do you remember the article about 'the dumbest things' people had said to you about what they believe caused ASD?). I think it is probably a need to feel like you are swimming rather than sinking makes people do it, but new-to-ASD parents often make big pronouncements in the early days which suggest that they are doing ASD 'right' and others aren't up to speed. They almost always regret that later when the humility kicks in, and I now have only empathy for them in the same way that you have empathy for a new parent who makes big pronouncements before the baby actually arrives! Do you really want all of these moments to be forever captured in print though while you are still very much learning (as we really all continue to be years later!)? Or to alienate the people that you most need now?
Giving your child privacy does not mean that you are contributing to a stigma, or that you don't love him and are trying to hide him. It just means that you are giving him the privacy that every individual on the planet deserves. It is not fair to write about him to anyone and everyone. Talk to those close to you. Educate people about ASD. But please don't use your magic man in this way. It is simply not fair, and something he didn't ask for, and certainly something that should be his choice in the future to talk about or not, when he is ready. It's not fair to take that from him, just because you want to talk about it.