Friday, February 18, 2011

"Take My Son" Severe Autism, Disrupted Families, and Difficult Choices

"When police officers finished binding her son Colin's hands and feet, they turned to Teresa Abernethy and asked what she wanted them to do with him. .... Teresa knew the answer but was surprised to hear herself say it: Take my son."

Parents with severely autistic children, usually sons, with self injurious behavior and aggressive responses toward those who care for them should read the Arizona Republic article Phoenix family makes painful choice due to son's autism by John Faherty. It portrays honestly the heart wrenching realities faced by the Abernethy family which could no longer endure the violence and disruption visited upon their family by the severely autistic son they  loved.

"As he grew older, Colin's outbursts were becoming more common and more violent. And they were usually directed at his mother. "He was such an imposing figure," Teresa, 42, said. When Colin was at school, there was respite for Teresa, but it was temporary. "The bus delivered him to the front door every day. He would come home, and I would be petrified."Some days he would run into the home, drop his book bag and start hitting her.

"Living with Colin was like living with an abusive spouse," Teresa said. "You never knew what was going to set him off." Colin's doctor, Dr. Kevin Berger, told her it was common for someone like Colin to lash out at the person he is most comfortable with. Teresa wore long-sleeved shirts to hide her bruises and bite marks, but she knew Colin's behavior was beginning to damage her entire family, something she and her husband had vowed would never happen."

The Arizona Republic and reporter John Faherty deserve high marks  for breaking through the usual mainstream media obsessions with a few exceptional and high functioning autistic persons and portraying honestly the heart wrenching realities that severe autism can impose on a family and their loved one who suffers from it. The Abernethy family deserve applause for their courage in talking honestly about the son and brother they love so dearly.  To the Arizona Republic and to the Abernethy family this father of a severely autistic, soon to be 15 years old,  son says thank you. 


michael said...

My heart goes out to them. I cannot imagine what I would do or feel in the circumstances.

Stranded said...

yesterday Khaled jumped on me while I was praying, not to hit me but just for fun! And continued to bang his head on mine for a while, tugging at my shoulders and such. He is a big kid now, and today my body feels like it took a beating.

I CANNOT imagine how this woman lived and when the kids are aggressive to that extent in their adult life. They are so strong!

I just pray everyday that KHaled does not become that aggressive kind of person, and mellows out, and all his therapy takes him in that direction, but you never know.

Brian@bothsidesofthecoin said...

Can't imagine this. Well, I can, and that's a little scary.

blogzilly said...

I can honestly say, too, that this article really scares me. My wife is carrying a very nasty welt from a bite from Bennett...and he is only 3. What kind of damage can he do at 5...8...15? Will it stop? Can it be stopped? We don't know. No one else seems to either.

John Best said...

And, nobody in the autism community wants to force institutions or group homes to try to cure the autism medically. Nobody in the autism community will even support the idea of running our own group homes to cure these older kids and give them back their lives. The leadership in the autism community is pathetic.

vmgillen said...

I spent the morning at a breakfast held annually to provide the DD community (Agencies, families, and self-advocates) interaction directly with politicians. Like everyone everywhere all we heard about was the massive budget cuts coming our way, as usual (6 years running, now)

We were assured that people would be taken care of, that the "promise of Willowbrook will be kept" - I'm in Staten Island, Willowbrook's site. Truth to tell, I felt like one of the kids in a Peanuts cartoon, with the adults going "blah blah blah" over my head. It just doesn't make sense. They just don't get it.

No mention of the HUGE numbers of people aging into a stage of life where needs become critical. . . and no one among the families stepped forward to offer ANYTHING outside of lobbying for more support from the politicos...

Parents were asked to wear large buttons: "my child has been on a waiting list for..." - I was able to say my children

There's a huge reality disconnect - people are left in piles of fecal matter for days, caregiving parents are ending up in the hospital, etc, etc AND WE HAVE MAINTAINED TAX BREAKS FOR MILLIONAIRES. What is wrong with this picture? said...

My heart goes out to this family, and at the same time I applaud them for their courage. It is very difficult for all of us seeing our kids hurting themselves or others. When my son was biting phase he was about 2 years ol;d, i was the only one he bit all the time. I was black and blue from bite marks. One day his ABA therapist saw me in short sleeve and she was shocked. When I told her she started a program with him to break the aggressive behavior.It took a few months, and he stopped hitting and biting me or anyone. It still happens raraly but not because he wants to do it, it is by accident, him being careless. Those few months were the worst time so far in my life keeping up the discipline but the best few months that was invested for our future.

vmgillen said...

just noticed part of my post was missing - my button said my kids aren't wait-listed because one child burned down the house, and the other died. But that's another story.

Autism Mom said...

This breaks my heart on so many levels. My mind races when I hear these stories. I know it was way off point here but my first thought was, what is going on during the bus ride? It's just me going straight to the problem solving mode I'm constantly in with my own son, 15 and severe autism.

I just received data showing average of 5 - 8 aggressions per day reported by his school. The good news is we are better at dodging then we used to be. The bad news is we can not always find the predictors, antecedents for the aggression thus we are still dealing with behavior management and Dan is still dealing with what autism means in his life. :(

Anonymous said...

I never posted on a blog before, this will be my first, as I came across your blog, I noticed you write a lot of posts about aggressive autistic adults and what to do with them.

I'm in this situation with my daughter who is in her mid twenties. She has moderate autism, lots of cognitive differculties, but will lash out at any moment, bite, hit, punch, our walls have all holes through them from severe head banging, etc. She will scream, yell and destroy everything in her path. For so many years I've been dreading what to do with her as she ages, and as most people age, they get slower, weaker, and calmer right?

My daughter will run in circles non-stop 24/7, climb walls, roofs, tables, anything, will pick up a 200lb couch and throw it at you(very strong), and is very fast. She will elope at any chance she gets, and can be extremely aggressive. My health took a turn for a worse, my doctor said I may suffer a heart attack soon and my son just moved into his new house, leaving me with my daughter. I don't want to give up on her, I still continue to help her grow, but now had to put her in a special day program.

She started today, for an hour, they already told me she is way too aggressive and hyper for them, and It is a 30 day trial period, I hope they keep her. She came home after an hour with bruises all over her arms, and a fresh new bump from head banging. I already know they used too much force on her as she walked in the house raging. What else is there to do though? I feel like there is no way out, no outlet. She can't be restrained, she gets angrier, and more aggressive, she needs to be constantly walking/running, jumping, and only may sleep at the most 4 hours a night. They work with individuals who are slower at their pace of moving, and cannot handle somebody so hyperactive. She has been on every medication, every supplement, every vitamin, and nothing calms her. I can't keep up with her anymore, I still work in my late 60s at home because respite is hard to come by considering she is extremely hard case to deal with.

It is crazy, she won't last long in an institution, or this day program, or a group home, she is very violent, and won't ever give up until she gets what she wants. What do you do with individuals like this? Where is there to take them? She doesn't need to be restrained, she needs to be out running, flapping, letting some steam off, all while having somebody try to fix her severe sensory problems, then she actually will be able to focus and learn. The sad part is, where to go to get that? My daughter just pushes me to the side and I fall I probably won't be able to get up, and she bounces literally bounces everywhere, runs, screams, and I'm so afraid what will happen to her if something happens to me.

Stories like these make me so sad, but there should be an answer, some sort of relief, something to let us know our kids can be safe, and still happy!!! Not left to be drugged, comatosed, possibly abused? or at worse left in jail to rot because their too violent to handle for typical people unless their extremely drugged. Excuse my writing, as it is 1 am, and I'm exhausted, and she is still up screaming.

There needs to be help, needs to be. For every parent of children who are younger, I wish I can say it gets easier, they die down eventually, with my daughter she just got stronger, faster, and at times more aggressive. It takes a lot of prayer, and faith, to make it through. Don't give up, we got to keep fighting for our children.

Anonymous said...

Obviously, Theresa Abernethy wasn't embracing the wonderful joys of Life in Holland with her large abusive son. Her inferior neuro-typical couldn't cope with the way her son was trying to communicate with her in his own special way.
Shame on her.
I'm being facetious.
Having taught teenage boys with autism, some of them nonverbal (oops! sorry! That's pre-verbal. Sometimes I forget to use the approved Autism New Speak and say stupid things like "normal" when referring to my own children) but I digress. having taught kids who used to whale the living daylights out of anyone who ticked them off (not me, fortunately, I'm quick on my feet, tall and athletic) I saw two of my shorter, slower aides get pummeled many times. One quit because she was pregnant and feared for the safety of her unborn baby. I quit because I got tired of working for chump change and, well, getting menaced by my students, none of whom appeared to learn anything during the entire fun year that I spent with them. I left for law school with a nice case of PTSD and a feeling of intense thankfulness that I COULD leave. Parents can't, usually. Those who do, like Ms. Abernethy get vilified for "deserting" and "dumping" their children.
I'm not heartless and I tried my best to help my students but they were too damaged. Despite what some self-proclaimed "aspies" say, autism is a horrible, horrible thing. It's NOT just a quirky, different way of interacting with the world; it isolates and stifles the children who have it and harms their families. We need to insist on government funding for better services, better schooling, respite care and housing for those who are affected by it.

Unknown said...

im in the situation of looking for a residential school for my 11 year old non verbal challenged behaviours too - fighting for an appropriate placement is as stressful than dealing with my son. Its heartbreaking and not easy to give a child into care - but i have a high functioning autistic child as well and i am a single mother - i fear that one day he will hurt his sister or myself. Bless you all, especially our children.

Anonymous said...

It is an awful feeling when your precious child lashes out violently... my son is 3.5 asd and spd. I am terrified when he meltsdown because he is so aggressive.. i am a single parent with pretty much no family support.. i have health conditions myself and its difficult to manage ... he is constantly hurting me and himself.... i just dont know how to keep doing this... he has therapies and routine but it hasnt gettin to the point where i almost wish one would take him....its sooo sad