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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Still a child

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Dedicated to the wonderful children who are too often defined by diagnosis, difficulties and impairments.

He sits in a wheelchair with a bib around his neck. People talk about him like he isn’t really there. They feed him something without thinking wether he likes it or not. He has no say where they take him or how he is dressed. But just because he can not speak do not assume he can not understand. Give him a chance. Would you treat any other six year old like that? Treat him with respect and love. Let him try. Let him be included. He may be disabled, but he is still a child.

He screams in your face when you touched him. He bit himself when you closed the door. He is flapping his hands at the rain falling at the window and isn’t interested when you say his name. You don’t need to shout louder because he isn’t deaf. As frustrating as it is to watch, losing your temper at him won’t help. People talk about him like he is unaware. They had information about him but never took the time to read it or do anything about it. It was filed away and forgotten. People try and engage on their terms taking no account of his interests or sensory issues. Some even physically remove him or close the blinds.window Where is the respect? Where is the love? He may be disabled but he is still a child.

She lies on the floor trying to roll. People are pushing and pulling her this way and that. Talking over her noises and ignoring her pain. They think they are helping. They talk to each other without looking at her face, her eyes and listening to her cries. They have their agenda, exercises to increase her movement that no-one has involved her in. Their intentions are good. But have they motivated her and relaxed her? Would you expect any other five year old to exercise without motivation or encouragement? She may be disabled but she is still a child.

She stands at the side of the playground watching all the others play. The adults find this concerning so they devise strategies to include her and teach the children to not allow her to be on her own. She is badgered by voices shouting her name and pulling her hands. She is forced to join in, forced to interact when she didn’t want to. Why did no-one ask her what she wanted? Did she lose the right of choice and privacy when they diagnosed her with autism? They think they are helping but no-one thought to find out if she was happier watching and joining in if and when she wanted to. While other children can watch it seems she isn’t allowed. She may struggle socially but she is still a child.

He can’t speak so they buy him toys that they think he should like. No-one thinks to watch him and see what his interests are. He wants to look at a flyer from a frozen food shop but adults deem that wrong and would rather it was a book. When he licks the toys they take them out his mouth and take them away. They set up fancy sets with tiny cars and bricks that he can not hold and expect him to play like any other child. They get upset and annoyed when he brakes them and screams. They put dvd’s on he has no interest in because it is deemed more age appropriate. They think he can not speak so he can not communicate. But he can. He would rather the baby toys still but they are too embarrassed to buy them for a six year old. He may be developmentally delayed, but he is still a child.

He swears at your face when you say hello. He came out of school kicking and screaming and threatening to kill his teacher and classmates. The other children are scared of hi20140225-210850.jpgm and the school threatens the parents with the police. They label him as disobedient, a bully, having challenging behaviour. They yell at him more than they talk to him. He is retrained far more than he is ever hugged. He is isolated from his peers and banned from after school clubs. They try to fix complex problems with behaviour star charts and bribery. He may have difficulties, but he is still a child.

Despite physical, mental and and social difficulties these are all children. Children who deserve time, patience, understanding and love. They have a right to choose, to be educated and respected, to be listened to and included. They deserve to explore the world around them, learn in their own way and play with toys they enjoy. They deserve hugs and tickles and kisses.

Difficulties and diagnosis should never define anyone. Even if they can not feed them self, dress them self, attend to their own needs, speak or struggle with social interaction or behaviour they are still worthy of respect.

Because most of all, they are still a child.

Just imagine if that child was yours.