One of the most difficult things to cope with when your child has a 'hidden' disability that affects their behaviour or social communication ability, is the attitude of other people, even other parents.
When my older son was small, he would always be on the go and would find playing with other children difficult, even though he wanted to. He would be unable to sit still in class, would always need to be first and when upset could go into a deep, black sulk that would be incredibly hard for him to recover from. I often felt that people were looking at him and blaming his 'bad' behaviour on a lack of parenting skills.
At first, he was invited to parties and to tea, but play-dates became few and far between. On the way home from school he would sometimes be in a fury because of something that had happened in school and would march off in front of us or sit on a wall and refuse to move. Other parents would pass us by, maybe with a pitying smile, sometimes with a disapproving look. What a terrible mother she must be, I could almost hear them think.
At the time, I was searching for answers to my son's difficulties. Other parents, I know, thought I was just trying to blame his behaviour on ADHD when he was just a naughty boy. After all, he looks perfectly normal and he's clever. He just needs a firmer hand! Then when he was initially diagnosed with ADHD (although later changed to Asperger Syndrome) and we tried medication, other mothers' disapproval was palpable. All he needs is better parenting - what kind of mother gives her kid 'the chemical cosh'?
Once, following the internment of my mother's ashes, we went for lunch at a local pub. We were several hundred miles from home so we had little option. My younger son, who also has AS, was distressed, hungry and thirsty. When he is like this he becomes unable to speak or make any decisions even about what he wants to eat. He made something of a scene and then, when food came, I had to sit him on my lap and help him eat and drink, which he was refusing..
A woman at a nearby table had glared at us throughout with the most sourpuss look on her face that you can imagine. I had had enough. "What are you staring at?" I challenged her. "My son is autistic and we've just buried his grandmother!".
The woman looked shocked that I had called her out. "You're the one I'm looking at," she claimed, which could not have been further from the truth. My sister, Deborah, who had seen the same thing, said to me, "Good for you."
That woman had passed judgement on my son's distress, not knowing anything about him or us. I feel angry now, just remembering it. She's just lucky my sister Claire hadn't been there; she'd have got up and smacked her one!
It's people like that woman and other self-righteous mothers who have no experience of children with so-called 'hidden' disabilities that make life harder for those of us who do. Sure, there are bad parents out there, but before people judge, I just wish they would consider that the child that's having a meltdown in the supermarket may just have special needs and the harried parent with them is probably exhausted, embarrassed and hoping for understanding, not condemnation.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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I can so identify. Im afraid that they have to have experience with these kids in order to realise, iVE developed a very thick skin, but sometimes would like to “whack” people.
Have go 1 aspie, 1 ocd and 1 bipolar
When my second child was born, I was home nursing her when my husband took the then-4-year-old daughter to church. We did not have a diagnosis at that stage (much later, she was diagnosed with Asperger Syndrome) but we knew something was going on, and she had just started seeing a psychiatrist and a therapist. Unfortunately, my husband had to CARRY HER OUT of church, literally kicking and screaming during a meltdown, and some well-meaning old man in the parking told ordered my husband to: “Put that child down or I’m calling the police.”
Hubby was extremely shaken up by it, so much so that he didn’t even want to go back to that church; I’m just sorry I wasn’t there with my no-BS attitude, because I would have handed the man my own cell phone and said, “OK, here, go ahead and call, and then you can call my child’s doctors as well.” I don’t know if this guy thought hubby was being abusive or if he was kidnapping her (people often mistake him for a grandparent rather than a father with his gray hair)…
Three years later, *I* am the one taking her to church. And I won’t tolerate anyone’s judgement, either. (Thankfully, the director of religious education at this church – 300 miles away from the other one, since we moved! – has a daughter with AS…)
Been there – done that – got a wardrobe full of t-shirts!
But no answers : (