Posted by: myautisticmuslimchild | December 19, 2010

Autism and Adulthood

I found this alarming article at Age of Autism. As usual, they hit a very sensitive issue that none of us should ignore anymore. One in 110 children are diagnosed with autism, and one in every 70  are boys. A startling 600 percent increase in the rate of diagnosis in the past 20 years.  We need to understand that autism can not be referred to cute little toddlers anymore, but now we have to think seriously about teenagers and young adults. According to CDC

“The number of autistic children expected to need extensive adult services by 2023 – more than 380,000 people – is roughly equal to the population of Minneapolis.”


So, what happens to an autistic child when they grow up? Will they have a decent shot  to have  a normal satisfying life? A parent has these questions while they are caring for them from a very young age.  As a parent of an autistic child I know how hard it is to get services for these kids after  they reach age of 3 years. Early intervention treatments, which are free in most states, seize after age of  3 years. Subsequently, this time we have an option to get education for our autistic child, from a public school system. If we are lucky we are able to find a good school where they specialize in autism, and offer other therapies.  Usually parents are responsible for speech and occupational therapy costs, not to mention ABA and VBA. These expenses add up very quickly as well as BIO med  treatments.
I firmly believe that if an autistic child receive early intervention,  most, if not all the behavioral issues can be diminished or reduced over time. This certainly takes time, and yes… it takes  a considerable amount of money. Still, it is  much less  expense for a few years  than housing an autistic child in a residential home for the rest of their lives.
The article below  displays a complete failure of  the system. This is truly tragic for the parents, as well as  for the autistic individual. My heart goes out to this family. They had to endure  physical harm, but now they are forced to witness their autistic son’s life unfolding in our judicial system.  Clearly , this is a very heartbreaking situation which I believe can be prevented. The government had been quite passive in this issue, not realizing that helping parents obtain such services can be more beneficial for society in a long run,and much cheaper too. I encourage you all who read the article below, to please  call your local governmental officials and make them aware of this pressing matter.
Thank you Age of Autism for bringing such an important subject into light, for all to see the truth.

December 17, 2010

Man with Autism Beats Mother: We Can Not Remain Silent

Domestic_violence

Managing Editor’s Note: For countless families whose kids are getting older, autism may be the norm in their household, as it is in my own, but it is hardly normal when you live in fear of violence at the hand of your precious child. Institutionalizing your child, whether you call it camp, residential school school or something else, isn’t normal either. It’s an agonizing decision I’ve watched friends make. No one wants to have to send their child away because they pose a threat to the rest of the family.  This sort of violence is not criminal. People with autism who suffer from myriad physical ailments and live with unrelenting frustration by virtue of their communication deficits are not vicious or evil or bad.  But they can be violent – and it’s foolish and naive to deny that. Autism is NOT the new normal. Families are drowning, dying even, and the answer isn’t “acceptance” because society is not going to accept people who pose a threat. Men who beat their family members or caretakers will face a life of chemical and physical incarceration. We’d best find treatments for those here, prevention for those yet to fall to autism and a whole hell of a lot of services for families like the Koumoutseas, whose lives have been changed forever by their son’s autism.  We can not remain silent on this issue. It’s only going to get worse as the kids get older. We need families in the Koumoutseas’s dilemma on the IACC.  President Obama, Senator Dodd, Dr. Insel, the disability community leaders need to hear from a Mom with a fat lip and her arm in a sling. THIS IS AUTISM TOO. From The Telegram.com. Please comment on their article.

A crime clearly occurred when 23-year-old Adam Koumoutseas slammed his mother’s head against an asphalt driveway, but the perpetrator wasn’t Adam, according to his father.  

“The crime is the lack of services,” said John Koumoutseas of Southboro, a sentiment echoed across the country by parents plagued with the near-impossible challenges of caring for older — and sometimes aggressive — autistic children. “If you took the time to know what I’ve been through in the past 20 years, you’d say my story can’t be true.”

But the elder Koumoutseas was too emotionally drained to share his story when we spoke Tuesday night. Exhausted and likely overwhelmed, he was at the hospital waiting to learn the condition of Pamela Koumoutseas, 60, who was out for a drive with her son on Saturday when he allegedly head-butted her repeatedly and then smashed her skull against a driveway in Westboro. Police arrived to find her lying on her back, semiconscious and covered in blood. When police tried to question Adam, he responded with grunts and unintelligible sounds.

The profoundly autistic young man was arrested and has thus begun his odyssey through a criminal justice system that doesn’t know what to do with people like him. Legally an adult, but unable to control or appreciate the wrongfulness of his behavior, Adam is the latest sad poster child for a system at a loss. And his violent outburst once again exposes the dark and controversial nature of the mysterious disorder.

In April, 20-year-old John Odgren of Princeton was sentenced to life in prison for the fatal stabbing of a fellow student. Odgren has Asperger’s syndrome, a mild form of autism. In October 2008, police say Shelleigh Wilcox was fatally stabbed by Benjamin Makinen, a 22-year-old autistic man who randomly knocked on her door at 10 Lancaster St. In Ohio last year, a professor at Kent State was beaten to death by her autistic son, 18-year-old Sky Steuernagel, a case that attracted national headlines.

Let’s be clear. Not everyone with autism is violent, and those with the disorder hardly deserve the added stigma. But we can’t deny that an aggressive strain exists in some. And while information on such a link is scarce, a 2008 study found “disruptive, irritable or aggressive behavior” in 8 to 32 percent of children with autism.

“It points out the need for better services and treatments,” said Rita Shreffler, executive director of the National Autism Association. “These situations are horribly sad for everyone involved. Families are overwhelmed and left without resources. Most children with autism are under 21. But a big group of them are getting older, bigger and stronger. And their parents are aging and no longer capable of caring for them.”

John Koumoutseas, 60, has been caring for Adam since birth and assumed custody after he and his wife divorced. He acknowledged that Adam has been violent in the past, both to him and his ex-wife, and said he was in the process of trying to place Adam in a residential facility. Adam has attended 10 schools — he was kicked out of two, and his father removed him from three that failed to provide adequate services. A small-business owner, the elder Koumoutseas said he was once affluent but now faces possible foreclosure because of the expense of keeping his son at home.

“My life has gone to shambles, slowly but surely,” he said. Asked if he loves his son, he said softly, “I love my son too much.”

Peter Wyman of Lancaster understands. Two of his sons are autistic, similar in age and temperament to Adam, he said. He, too, has struggled to keep them at home, but that requires support services not adequately funded by the state. Instead, the state is often willing to place autistic children in residential homes that cost hundreds of thousands of dollars a year.

“The system which enables severely challenged kids to stay home is broken,” Wyman said. “The odds are stacked high against us.”

Worse still, Wyman said he’s sickened that Adam was arrested and hauled into court. He said his own autistic sons have adult bodies with the cognitive abilities of 2-year-old children. Adam was charged with assault and battery and other crimes, and his bail was set at $20,000.

Meanwhile, his mother is in stable condition and his father is hiring a defense lawyer. Neither parent believes that Adam should be subjected to the legal process when he has no idea what he’s done. But as children with autism grow bigger and stronger, solutions and alternatives are scarce

“It’s like something out of 1940,” Wyman said. “These children shouldn’t have to become front-page news before they get help. That’s the bottom line.”

Read more: http://www.telegram.com/apps/pbcs.dll/article?AID=/20101216/COLUMN01/12160854&CSAuthReq=1#ixzz18I2k5RjV

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Responses

  1. I know a lot of people on a CFS forum who have family members with autism (either a sibling or a child), so there’s often a connection between the two illnesses which doubles the difficulties for a parent who is already physically ill having to raise a child with such challenges. One 18 year old girl with CFS had to stay at home to look after her 15 year old autistic brother whilst her mum went out to work. She was still expected to stay at home to care for him when she was pregnant (she said social and child care services in her area were useless) even though he was violent and at one point during her pregnancy, he attacked her and broke her foot.

    I was talking to another mother in the chatroom a few months ago and felt very strongly that it was as though the system was tying both hands behind her back and expecting her to cope regardless. Her eldest son has aspergers syndrome, a great aptitude in Maths and computers but very obvious agression and social interaction difficulties.

    I say her hands are tied behind her back because now that he is 19 years old, legally she has no rights to advocate for him. When he visits the Dr, he often wont admit to any physical/mental health issues for fear of embarassment but she is not allowed to speak on his behalf or anything. Access to any services require that her son specifically asks for them or agrees that he needs those services but part of his mental impairment is precisely the fact that he isn’t in a position to recognise that there is a problem in the first place. He is not mentally/emotionally well enough to work and it’s quite likely that if he fully disclosed his true level of difficulties, he would be entitled to some level of disability benefits to help him live independently (she is paying for him to live in a separate flat because he became too aggressive towards his younger siblings), but even then she encounters the same problem. She is not allowed to fill his forms in for him and when he fills the forms himself, he wont admit to most of the difficulties he experiences that would increase his chances of accessing those services.

    Whilst I can understand that legally, the government want to empower special needs adults with the right to make their own decisions and prevent any potential for exploitation by their guardians/carers (eg a sibling deliberately making a deterimental decision to gain access over a share of inheritance), in many cases, these same laws are letting down vulnerable adults and preventing them from getting the help they need.

    It’s hard enough supporting children with special needs, but at least parents of special needs children are allowed to be consulted and allowed to speak up for their children to help them access whatever support is available. Once those children become adults, they seem to lose that right and I think that is wrong, especially when the person has a low mental age and doesn’t understand the reality well enough to make decisions for his/herself.

    Neelu

  2. Interesting and useful information My Autistic Muslim Child . I just wanna tell U “Thanks”. Thanks!

  3. Looks like you are an expert in this field, you got some great points there, but you’ll want to add a facebook button to your blog. I just bookmarked this article, although I had to complete it manually. Simply my $.02 🙂

    – Daniel


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