Why I No Longer Tell People My Children Have Autism (even though they do)

I always thought I was a proud ‘autism mum’, unashamed of my children and spreading autism awareness wherever we went. It turns out I have actually been harming my children, and the autism community, without even realising it.

Let me explain.

It’s the school summer holidays and both my children are autistic. One of my children has severe autism. He has also recently been diagnosed with epilepsy. At 9 he has no spoken language so he often screams. He chews his cuddly toys, flaps, spins, claps and makes repetitive noises. His twin sister has anxiety, is selective mute, freezes if someone talks to her or even looks at her and is very much in her own imaginary world.

Yesterday I took them out ten pin bowling followed by a trip to a well known fast food restaurant.

When we arrived at bowling, despite pre-booking the lane online to save waiting, there was still a queue. My daughter panicked and became anxious and distressed, asking a million questions over and over again

‘What if it’s too busy mum and we can’t play?’

‘What if all the lanes are broken and we need to go home?’

‘What if there are no staff because they are all sick?’

‘What number lane did you book because I can see people on lanes and they might be on our one…’

And so on.

Meanwhile her brother was wandering, flapping, chewing the nose of his teddy and otherwise just acting happy and excited in line with his developmental age of around 18 months or younger.

This time last year I would have not stopped talking. In fact I would have been similar to my daughter who was saying so much out of sheer anxiety. Except my anxiety was different as I was much more socially aware and I felt I had to ‘explain’ my children’s unusual behaviours. I would have turned to the strangers behind me and said something about how both children have autism and find waiting difficult and my son can’t speak. Even if they were not even looking at the children or even bothered by them in any way I still told them anyway! I then would have made a big deal of announcing to the person at the counter how the children had autism and global delay and my son could not speak and this and that and…well more than she or anyone else actually needed to know!

I truly thought I was helping. I thought I was explaining behaviours and educating strangers. I believed I was spreading ‘autism awareness’.

Actually what I was doing was embarrassing my children, portraying autism as something that needed excusing or apologising for and exposing my vulnerable children to the world. Would I have felt the need to broadcast my children’s difficulties if they had been wheelchair users? Would I have shouted it to the world if they had a hidden genetic condition or a medical condition like diabetes? Yes my children were noticeably different but by mentioning that fact I was actually drawing MORE attention to it and not less. My anxiety was making things worse.

This year things are different. Naomi is asking question after question, Isaac is flapping, wandering away and chewing his teddies. They are openly different.

But now I keep quiet.

Now I no longer tell strangers my children have autism even though they do.

I am not ashamed of my children, neither am I embarrassed. Never. Not even for a second. In fact I accept them totally and wholeheartedly for who they are. That is why I stay quiet.

My children deserve respect and privacy. Society should accept them without any justification.They should not be accepted because ‘they have autism’ but because they are wonderful, beautiful and unique just like everyone else in life.

So yesterday we were issued a lane (number 19 if you really need to know) and I supported my precious children to take turns, use a support frame to push balls down the lane, and to watch excitedly as pins fell down (much more often when they rolled than when I did!). No-one stared, no-one asked questions or even really cared about us much and I never once told anyone my children have autism.

When we had had our ten games I helped them into the car and I drove to the nearby well known restaurant. I ordered nuggets and one ate just the skins and drank only milk while the other licked the table as well as his food! Still I never once mentioned autism to anyone. Both children clapped, flapped and made baby noises. I still never mentioned autism.

My children haven’t changed. I have.

Last night I apologised to both my children. I can’t say how much either of them understand how my own anxiety caused me to feel I had to tell the world about their diagnosis when in fact it was no-one else’s business. If THEY wish to tell someone about their own autism (I understand my son is likely to never reach this stage due to lack of spoken language and severe learning difficulties but he still deserves the same respect and I treat him as if he does understand anyway) one day that is THEIR choice. If my daughter (or son) wanted to wear clothing stating they had autism again that would be their choice.

But until then I have no right to disclose their diagnosis to complete strangers just because I feel the need to justify and explain their behaviours. Everyone is different and we should all just accept that without explanation or labels.

I am learning. I am not anxious anymore. So I no longer tell people my children have autism even though it is obvious they do.

It is making for a much more relaxed life for everyone.

P.s. They both beat me at bowling…I wonder how I would feel if they told everyone I was rubbish at bowling…

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6 thoughts on “Why I No Longer Tell People My Children Have Autism (even though they do)

  1. Beautiful post. I apologise for everything. If someone barges into me I say sorry and I have been guilty of apologizing for my daughter’s autism because IM embarrassed not her. It hasn’t felt right though and you have explained it in a way that makes sense to me now. I am going to try and be less of an explainer in future! X

    Liked by 2 people

  2. It must have been hard for you to make that decision, but now you can focus on your children, not explaining their differences away. We are all different in our own ways. If people don’t like the fact of your childrens’ autism, they can jog on. The world is hard enough at times without having to justify things x

    Liked by 1 person

  3. Good for you 🙂 There are times, of course, when it becomes necessary to explain, but they are surprisingly few and far between. It’s also worth remembering that, with or without disabilities, children often end up drawing attention to themselves when their parents would rather they didn’t. I’ve had children point at me and ask their parents in my hearing why I have one of those (mobility scooter). Often, my response has been to smile and explain very simply that my legs don’t work properly. This seems far better to me than watching the poor parents squirming in embarrassment while they try to work out what on earth to say… I mean, the kid just wants to know…

    Liked by 1 person

  4. Autism Mom’s are our children’s best advocates and biggest protectors. That being said, there’s usually a lot of thought that goes into anything pertaining to them, which is where the anxiety comes from. I work through it everyday as it spills over into other parts of my life. I guess the only we can do is acknowledge it and work on it. This is a great post. Thanks for sharing.

    Liked by 1 person

  5. I agree with you 100% about not broadcasting your children’s condition in front of your children! I could not agree more. Our younger son is also 9 years old and we’ve managed to bring him from somewhat severe autism (like your son’s) to moderate autism. Mild autism in some respects like behavior – unless you know you may not be able to distinguish him from other kids in public. And he used to stand out!

    If I could you. Your son has autism and epilepsy. Regardless what the medical world says, these conditions are rooted in brain inflammation (which stems from a dysfunctional gut which contributed to an out-of-calibration immune system). You may wish take the approach we did to dramatically decrease the inflammation and the symptoms of autism. You need not accept these as permanent.

    The first thing to do is to cut out all preservatives, food dies, dairy, gluten, sweet fruits, juices, sugar and all other junky, cheap food-like products. These feed the inflammation like gasoline. Don’t take the kids to fast food places!!! Go as organic and low carb (no breads, carby snacks) as you can. Include good fats including animal fats like bacon (but with NO nitrites or nitrates). Don’t pay attention to the propaganda about good, saturated fats. We need them to produce hormones, enzymes etc. Includes lots of olive oil, nuts low in omega-6, avocados.

    You will get withdrawal symptoms for a few days so make the transition gradual but steady. Be firm. This is the foundation. Then you need to go after the fungi/candida. Use a drop of oregano oil in a tablespoon of olive oil before bedtime. Use essential oils: frankincense, peppermint, ginger, lavender, cederwood, vitiver. Use cocoa butter, coconut oil, collegen.

    Find a practitioner with a Zyto machine and test your kids for Round-Up Detox inability. Especially if they are blood type A. Then use Envi-Rad drops.

    Look into & use triphala powder. It fixes the digestive tract, is highly anti-inflammatory, and repairs neural networks. You will turn your kids around. Good luck!!

    Like

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