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!
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.