This year’s new autism strategy must see disabled children as part of a family eco-system which needs careful preservation, writes Victoria White
I used to wonder why people shared distressing details of their life on Joe Duffy’s Liveline but I guess it’s because they’re desperate. They’re crying out for help to all 370,000 listeners in the hope that one of them will respond.
Mary got a response from me which has stayed with me since I heard her on Liveline last week.
At least once a day, I’ve hoped someone more effective than me responded as well and got her help with her out-of-control autistic son, who is seven years old.
He has tried to set the house on fire. He has opened and drunk household cleaners and would do the same with medication if he got the chance.
“He has destroyed my whole house”, said Mary. “He’s eaten the walls, he’s eaten the cupboards, he’s pulled the cupboard doors out, he’s escaped out the windows upstairs.” I have some small inkling what she’s going through because my much-beloved autistic son gave me a few months’ hell with challenging behaviour when he was five.
My life was a living hell. At times I wanted to die. At other times, I wanted him to die.
I had a partner and was well-funded but I was drowning. Medicating my son got me to shore, where there was a special needs school.
Mary is on her own and shares a bedroom with her autistic son and his twin. She says she sleeps “with one eye open”, which means she doesn’t really sleep.
Not surprisingly, her mental health has been on a downward spiral since Christmas because she can’t access respite support. She shared with Joe and his 370,000 listeners that she had made an attempt on her own precious life a short time ago.
I hope and pray she has since got a lot more support from both State and community but my hopes and prayers are of little good to her. What she needs are rights.
Her children have rights under the Children’s Act, the Constitution and under international charters. Her son with autism has rights under those same acts and the Disability Act.
She has no rights.
Her 24-hour days of hell are not considered work and therefore she can’t legally be over-worked. Because her autistic son is a child with a disability, he can’t be accused of abusing her.
He is abusing her. I know he can’t help it but it is still abuse when it is felt by his mother. Her own home is a House of Horrors in which she can’t sleep or be at ease.
So many things have to change here that I hardly know how to begin.
Mary’s case, and those of the many like her, must be assessed differently to those of people like me who have autistic children who are currently, with the aid of care and medication, compliant.
They must be considered workers because workers have rights.
The State must come in as a partner in the care of this boy, leaving Mary with a bearable amount of caring. To work out what’s bearable, the HSE should consult the INMO about the terms of psychiatric nurses, which, now I come to think about it, are extremely hard to recruit.
Mary needs respite and lots of it. She needs night-time respite, day-time respite and holiday respite. In tandem with respite, her son needs an educational regime and if deemed necessary, a medication schedule, to help manage his behaviour.
The reason she needs this massive level of intervention is because otherwise we will lose her to illness. That can’t happen because she is her children’s world.
This is not a wild surmise. It is a simple fact that nobody can survive the level of abuse this woman is going through.
If you want confirmation, just ask the best torturers employed by the most repressive regimes in the world.
People have limits, even mammies. Mary still says she her fondest wish is “to be able to mother him (her son) for as long as possible”, a statement which confirms to me that human love is truly divine.
It makes economic sense — as well as moral sense — to support Mary to be her son’s Mammy because no-one loves him like her, no-one cares for him as well as her, and no-one else can preserve the family’s unity which will be this boy’s only hope, going forward.
I am sick to death of this society’s inability to face the nightmare of challenging behaviour.
Literally no-one wants to know.
When my own autistic son was assessed recently for an adult placement, the psychologist told me he was likely to get one because his behaviour was good, he was sociable, and had lots of interests.
My first thought was that the most challenging kids should get the first places.
If every school and every respite centre and every day centre is running its own beauty contest for the most acceptable disabled people, where do the unregulated kids and adults go?
In the past, they went to ‘Bedlam’. They were incarcerated behind high walls and forgotten about.
That was terrible. I wonder how much more terrible it was, though, than incarcerating these kids and vulnerable adults with their parents behind the walls of their family homes?
In a case that had a huge impact on autism care in New Zealand, that of the manslaughter of a 17-year-old autistic girl, Casey Albury, by her mother in 1997, Janine Albury Thomson said that the thought of prison didn’t bother her because “we were in prison already.” Casey’s behaviour had become, she said, “impossible, it was beyond any one human to cope with it.” That’s just a statement of fact, to my mind. Staff up a unit for a severely challenging autistic child or adult and you could be looking at a ratio of 4:1, all four working shifts so that they all get to sleep and see life outside the unit.
It was considered an indictment of the ability of the New Zealand system to reform three years ago when another single mother, Donella Knox, killed her 20-year-old severely and multiply disabled autistic daughter, Ruby. Her calls for help had gone unheard and in the end she became convinced she was just ending her daughter’s pain.
Summing up, the judge said, “I think it is right to call your relationship abusive... She (Ruby) restricted your social connection with others and any wider career and life aspirations you might have had.” Even Mammies can only take so much abuse. Without help from others, they collapse. Many autistic kids with challenging behaviour are killed by their carers and their cases are splashed all over the internet. The parents of severely disabled kids who take their own lives make no headlines but tragically, I know they are there.
This year’s new autism strategy must see disabled children as part of a family eco-system which needs careful preservation. Failing to support the primary carers of severely challenging children and adults threatens carers’ mental health and their very lives, exiling those for whom they care to the black night of despair.