“So I left. With no money and nowhere to go, I ended up living in a tent, afraid to return home to my autistic son.”
By Heidi Brown
My 21 year-old son, I’ll call him B, is about 6 feet tall and 220 pounds. Most of the time he is a sweetheart, but like the flick of a switch, he can start to rage, breaking everything in his path, including me.
The public face of autism is young and cute, but when our little boys grow up, with large muscles and no impulse control, they can be scary as hell. After all we have been through, I am not ashamed to say I am afraid of my own son. This is the story about how autism made me homeless, reduced to living in a tent.
B has a history of aggression that started as a child. For example I can recall him pulling his sister’s hair, and later trying to bash her head in with a rock. Of course we tried a variety of interventions and medications to help him, but face it, as our kids grow up, and if you have public-benefit insurance, good care is hard to find.
Last June, in response to a new medication, B started having really bad seizures along with vomiting, he was miserable. With my ex-husband living elsewhere and our daughter away at college, I lived alone with B in our apartment. I knew I was vulnerable but what choice did I have? One night he attacked me for four hours straight. Now, I have done 13 years of karate and know how to defend myself, but I couldn’t fend him off anymore. My hair was drenched in sweat, I was bloodied and bruised. B broke everything, I can still see the batteries flying out the phone, the pictures falling off their hooks, their glass shattering on the floor. I screamed out the window, “Help me! Please somebody call 911!”
About 20 firemen, paramedics and police ended up in my apartment, after they called for more people for help. My building’s elevator was broken, so they put B in a type of body bag to take him down the stairs, and I remember his head bashing against the railing. I wailed with anguish.
After the ER he was admitted to a nearby psychiatric hospital, which I can only describe as the pit of hell. It has the whole array of mental illness and drug use, and people like B don’t quite fit in this population; he is very sweet and angelic, when he’s not trying to kill me.
Early in the morning I went to the hospital to try to get B back. After a long wait finally B comes out jumping up and down smiling, looking like an angel. In his bag I noticed the discharge papers B had “signed” indicating he “understood” the doctor’s orders. Of course he lacks the cognitive ability to understand of word of it, it was a charade for the hospital.
I could not be part of the discharge process because he is a legal adult and I am not his conservator. One might ask why I have not conserved my son. Let me explain: I cannot take on a legal responsibility I have no ability to discharge. Of course I want more than anything to keep B and others safe. But I can’t. It’s not physically possible, and I don’t want to be held liable for violent acts I cannot possibly prevent.
There are other ways to get medical information and help make medical decisions, without the liabilities that come with conservatorship, so I’m pursuing those.
“The longer I was alone caring for B, the more terrified I became and the less wind I had under my wings.”
So after this, B and I were again living together in this apartment just doing the best we could. Obviously it was a fragile situation, but again, I had no options. I have tried every treatment and sought all manner of help for my son. I tried to give him a good life in that apartment, even when he would hurt me, for example in May when he cracked my head open with his cell phone.
Some autism parents need to hide all the knives, but it’s not like that with B. He can’t premeditate, the rages are very all-of-a-sudden.
So let me be honest. I burned out. The longer I was alone caring for B, the more terrified I became and the less wind I had under my wings.
I took a two-week sanity break from B while his father moved in to watch him. When I moved back in, last month, my son indicated his toe hurt, and I could see he had an ingrown toenail. I took him to a podiatrist, the most compassionate doctor we have ever seen, who managed to remove the nail and give him antibiotics for the infection.
But unfortunately B had a terrible reaction to the antibiotics. In his misery he beat me up. There was blood everywhere, I had a black eye. Afraid to call 911 and go through the psych hospital nightmare again, I asked his father to come back, and I would again leave home.
So I left. With no money and nowhere to go, I ended up living in a tent, afraid to return home to my autistic son.
Just the other day I found an inexpensive room to rent, and after more than a month of being homeless it’s a relief to finally have a bathroom and a kitchen, and a roof over my head where I don't have to worry about freezing at night or how to eat with a cooler. But I am exhausted.
What happens next with me and my son, I don’t know. We are living day by day.
I am sharing my story not to ask for pity or sympathy, but because I want people to understand the terrible vulnerability of autism families, particularly those living with severe autism. They face unthinkably traumatic circumstances, through no fault of their own. To anyone who may judge us, I say please walk in our shoes, even for a day.
Heidi Brown is the pseudonym of an autism mom who lives in the San Francisco Bay Area.
Editor’s note:
Excerpt from the Handbook for Conservators, 2016 Revised Edition, by the Judicial Council of California
4.9 Keeping the Conservatee from Causing Harm
It is your responsibility to take whatever reasonable steps you can to stop the conservatee from hurting someone or damaging someone else’s property. Your lawyer can suggest courses of action.
For example, if the conservatee has a driver’s license, but you have seen the conservatee drive dangerously, you should do the following:
■ Let the conservatee’s doctor know so that he or she can provide the appropriate information to the Department of Motor Vehicles so that it can start the process of canceling the conservatee’s driver’s license.
■ Consider having the conservatee’s vehicle disabled so that he or she can’t use it. Consider also storing the vehicle where the conservatee can’t get it, or even selling it before it depreciates, if the conservatee will not be using it in the foreseeable future. Coordinate storage or sale with the conservator of the estate, if he or she is a separate per- son.
■ Arrange for another means of transportation, so the conservatee doesn’t need to drive. For example, you might buy a bus pass or taxi coupons for the conservatee or arrange for community van service, if it’s available.
If you don’t take all reasonable steps that you can to stop the conservatee from causing harm, you may have to pay out of your own pocket for the cost of any damage to people or property.
You or the conservator of the estate may be able to obtain insurance that will reduce the risk that you or the conservatee will have to pay out money for such harm. If you are worried that there is a serious risk that the conservatee may cause harm, check with your lawyer.