Mothers of autistic children in crisis. The need for better services

In the UK and in other counties, public services are being cut. The cuts are made  to decrease national debts and to cut taxation because political parties want to be seen as making tax cuts to win over voters. Cuts in services have the greatest impact on the most vulnerable people. Amongst these are the mothers of  those severely autistic children. whose behaviour is challenging Fortunately few mothers end up in such crises that they kill or attempt to kill their child, but many live in fear of aggression and with too little support. The father of the child is often absent from their lives.

This post is to highlight two things:

  • the need for good educational and behavioural management services for autistic children from the time they are very young. These services decrease the frequency and severity of behaviour which will become increasingly difficult to manage as the child gets bigger;
  • the need for effective  support, respite and residential services for young people and adults whose needs are greater than their families can provide.

Without these services more tragedies will happen. Some will be dramatic, others the undramatic dreading of each new day.

I was told my autistic son exhausted all the services when he was a teen, including the state mental institution after which he was returned home to my care. At times I feared for my life. I feared for the lives of my other children. I was only told my son had failed all the services my county had to offer and that I should call the police when he became violent’


 

A 6-year-old autistic child from Newport, Oregon, died after his mother, Jillian McCabe, allegedly threw him off of the Yaquina Bay Bridge. McCabe called police Monday night and admitted she had killed her son London McCabe, and the boy’s body was discovered in Yaquina Bay shortly afterwards. Jillian McCabe, 34, of Seal Rock appeared in Lincoln County Circuit Court  for a preliminary hearing on charges of aggravated murder, murder and first- and second-degree manslaughter. A motion is expected to be filed later by Jillian McCabe’s attorneys to request a determination on her fitness to proceed, court records show.


 

Kelli Stapleton pleaded guilty to trying to kill her child by carbon monoxide poisoning, and was sentenced to between 10 and 22 years in prison. She has previously  blogged about her struggles with care and treatment for her daughter, Isabelle, She pleaded guilty to shutting herself and her daughter, then 14, in a closed van with two lighted charcoal grills. Although found unconscious, both recovered.  The plea to a charge of first-degree child abuse averted a trial for murder and led to a three-day sentencing hearing. Supporters urged leniency for their friend who, they and Stapleton’s former husband have said, was beaten and hospitalised as a result of her daughter’s increasingly violent outbursts.


Gigi Jordan was convicted of manslaughter in the first degree for giving her 8-year-old son Jude, who suffered from autism, a fatal dose of prescription pills . She faces 5 to 25 years in prison. Her defence team managed to convince the jury with a strange tale, claiming Jordan had been trying “to save [Jude] from a life of sexual torture” at the hands of his birth father. Jordan said her husband at the time was plotting her murder, and she didn’t want the boy to end up back with his abuser. Both men denied the allegations. The prosecution argued that Jordan killed her son, who was nearly non-verbal, because of his severe autism.


 

‘You guys do not have a clue. I want to kill my son! Yes I want to get help but let’s be real there is no real help any more. There is no help because there is no money in our agencies to help. Thank you all who keeps the tax cut stuff going. You have destroyed the safety net for people with mental illness. The only treatment I have been able to find for my 29 year old son is a day program that offers some group therapy. For me it’s just a babysitting service. My son is mentally ill, autistic, and mildly retarded with rage issues. He is 6′ and 240 lbs. He is mean.. My family has  drifted away because of his behaviour. I am in fear of my own safety. So yes I want him dead or gone. I have even thought about putting him out on the street in an unsafe area of a major city near me and just let the streets take care of him. He will piss off the wrong  person and he will be dead.’


 

 Health officials say the murder-suicide of a Canadian mother and her autistic son should serve as a wake-up call that drastic changes need to be made within the system.The bodies of 40-year-old Angie Robinson and her 16-year-old son Robert were found inside their home in Prince Rupert, British Colombia.Robert could not speak and would often express his frustration by head-butting walls and people and pushing and shoving his mother.A suicide note left  and her final Facebook post, showed his mother  felt she could longer manage  Robert and that Family Services could not provide adequate support.

Advertisements

Living with autism – a sister’s story

It’s often difficult for people with a disability to lead an ordinary life but  it’s often difficult for family members too.  Family members may feel that they cannot express their true feelings. Emma, whose story is set out here, bravely sets down her feelings about her brother’s autism. Her story is included here to show just how difficult it can be to live with a severely autistic sibling – and to show that it is OK to express negative feelings. We don’t have to be saints!

I have never accepted my brother’s autism and have found it very difficult to deal with. His name is Daniel, and he has severe autism. I am 18 years old, and he is 16, with the mind of an infant. I shall never hear my brother say my name. He cannot speak, is still in nappies, and has been living in a special care home for four years due to his unmanageable behaviour. Whilst I was growing up, I found life very difficult. I buried my head in class work and focused on getting the best out of life. I am going to university soon and I am immensely proud of what I managed to achieve despite everything that was going on around me

. After my brother was diagnosed with autism at the age of two, my life turned upside down. For the next 10 years, social workers and helpers would constantly be in-and-out of the house, discussing my brother’s needs. Conversations between friends and family would often be related to Daniel, and disability.

I missed out on many normal things in my childhood. My parents tried to make time, but they were often too stressed and preoccupied with managing my brother to listen to my worries. I would often shut myself in my room and cry, while my brother watched ‘Jungle Book’ for the 1000th time, making a big noise downstairs. He would wake up in the middle of the night and kick my bedroom wall, making sleeping a difficult task in my house. Doors, windows and cupboards had to be locked and I couldn’t leave out any toys, school or art work because they would get eaten or ruined.

On a few occasions, my brother managed to escape from the house and ended up on a nearby road. I’ve always thought that he’s like a cat with nine lives. Once, I forgot to shut the front door of the house when I was watering my plant in the front garden and he ended up on a platform of the nearby train station. I hate to imagine the guilt I would have lived with from the age of 10, had anything happened to him

. I wish I could accept his autism, and perhaps I shall in time. I suppose I just need to move on from imagining the ‘what if?’ life I could have had with a normal sibling, a close friend you grow older and shared special occasions with. I have so many memories of my brother running around the house naked before his bath, or running into my room screaming or trying to hit or bite my parents. It felt like he always had an excuse for bad behaviour. On other occasions, he was funny and would just keep himself happy

. I often fear the future. I fear what would happen if my parents died and I’d be his only family left. I fear that my own children which I so long to have in the future, will be severely autistic too. I am sad that he will miss out on life’s beauty, will never have children of his own, and will never be able to live without care.

I wish he could talk to me, and I wish I could be strong enough to visit him once in a while. But I find it so hard to see my teenage brother getting older in appearance but remain the same in mental age. Mum and I have often said how we wish he could stop growing and remain a little child forever. I hope one day I stop feeling jealous of my friends and family with normal siblings. I hope one day my relationship with other members of my family will not be so strained. Although I still get depressed about having an autistic brother, I have definitely learnt to appreciate life. I work hard towards a life I am grateful to have. I am compassionate towards those in need, and don’t worry about trivial things. I am so close to my mum, and I love spending time with her, as well as my cousins when I can see them.

I don’t hate my brother – I hate autism, and what it’s done to my family.

Click here to go to the website of The National  Autistic Society for information about autism