Lost in the cracks of society

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As an infant, it was apparent that something was not right with my son. He was above average in milestones at all ages yet there were inexplicable issues. I dreaded kindergarten. Sure enough, he was ALWAYS in trouble and I was repeatedly accused of being a bad mom who never disciplined my child. Except that I did, although no one would believe that. (When I asked what they meant by discipline, they always listed off all the things I was doing and all of those things were always successful with my second son, who always has been an honors student and a very mature, responsible kid that everyone loves.)

We began the gamut of therapists, behaviour specialists, medication, IQ test, etc. Everyone was stumped and so over the years he was given a slew of diagnoses for behavioural issues. He was treated as such and so his negative behaviours increased. And it was all my fault for being a bad mom.

At 12 year old, he was finally diagnosed with Asperger Syndrome but only because my boyfriend had read an article and asked if we'd tested for that. Because I was a single mom, (a.k.a. low income) we could find no appropiate treatment programs. My son, I'll call him Z, dominated the household to the point that his brother who's 5 1/2 yrs younger was neglected. I could not perform simple functions such as cooking, doing the dishes, laundry, etc because Z would simply flip out if he wasn't the center of attention at all times. He would throw fits - kicking, screaming, throwing toys, he'd run around laughing like a maniac, he'd interupt and simply would not shut up, he'd sit and tear up paper into teeny tiny bits, etc. He was kicked out of several daycares. The school was calling me at work several times a week. (Remember, I'm a bad mom, so this is all my fault.)

At one school, I thought we'd finally get some help because the director of special education had a son with AS. She was the biggest B@#$ I've ever met! She was extremely stuck up, disspassionate, very cold and business like. She refused to believe Z's diagnoses because her son had none of the behaviours and issues that Z did. I pointed out that if she's met one autistic persion, then she's met just that...one person with autism and that they are each as individual as any nuerotypical person. I pointed out all of his 'AS' and 'autistic' traits and she continued to believe that she knew more than I and his Dr.'s. She only ever made both of us feel even worse and that year was his most difficult school experience.

I believe that due to so many years of being mis-treated (yes, pun intended), after 12 yrs of being told he's a bad kid, he can't do anything right, no one (adult or kid) likes him....he ended up with ALOT more problems than he started with. He soon reached the point of 'Well, if I can never do anything right, if no one likes me no matter how hard I try, then I won't try. I'll just do my own thing and to hell with all of you." And honestly, who can blame him?

Over the years, I would track down various schools or treatment facilities or programs that were designed especially for high functioning autism. But they were never accessible to us because they were all private and we couldn't afford them. I tried working with social services and the court system. I believe that damaged Z even more that the initial mis-treatment. He was put into facility after facility that would put him in body holds and inject him with drugs to knock him out for simply speaking his mind or raising his voice or refusing to allow himself to be abused by staff or other kids. As he was now in the court system, I had no say so and could not remove him from these places. One such place was so abusive that I reported them to social services and they were subsequently shut down - but only after months of abusing my son.

I probably don't even need to explain the nightmare that was school. After not completing assignments, failing all tests and being pushed through year after year, he finally dropped out after two years of 10th grade. He made a very feebile attempt at online classes but was depressed, uninspired and lacked motivation and self-discipline.

Now at 19 years old, he's a drifter with no real goals. He wants to work but can't get and keep a job. He has little interest in mainstream society- can't say I blame him. He wants to live as close to nature as possible; the one place he's unconditionally accepted and appreciated. I come up with ideas for him to try but it involves being around other people or it involves trying something new....he never has any interest.

For the past 6 months, he's lived in a communal situation at a buffalo conservation group. As much as he loves it there and loves what he's doing, he's ostresized himself because he knows he acts weird and no one knows how to take him. He's ashamed of being AS, really he's just sick of always being so different, so he refuses to explain it to people. He almost always volunteers for office duty so he can be by himself and just play on the computer and watch TV.

After being on a scary cocktail of pills from 7 - 16 yrs old, we made the decision for him to come clean and see where that left him. I assumed he'd need to go back on Concerta and an anti-depressant but felt that we needed to start from scratch. I still feel that he desperately needs those medications. However, there are two problems. Initially, he refused to try any meds again. After a couple years, he agreed that he might should try those two again.

Z was on disability since 2nd grade. However, when he was 16, he wanted to work for the summer, which meant losing disability. In the fall, we got him back on disability. The next summer, we did the same thing - which ended badly as he was fired for his AS issues. Except that now he's being denied disability. Someone at social services recently explained that disability has programs that will allow recipients to work limited hours and still receive disability, or at least to start receiving it again if their disability continues to inhibit them. Yet he's still being denied.

Z cannot live at home. He is still of the mind set that he's always right, the world has done nothing but abuse him and he's going to do anything he wants. When home with us, he leaves a mess everywhere and simply will not take care of his own responsibilities. He argues with everyone over everything. He's hyper-sensitive and if we show the slightest frustration or displeasure, he's literally in our face, yelling, telling us to chill out, we have no right to be mad at him, etc. He endlessly tells his 14 yr old brother what to do, not do, feel, not feel. If his brother expresses the slightest interest in anything that he is not interested in, then he's yelling at and belittling his brother. His brother hates him. He's tried to meet Z in the middle but Z refuses to meet anyone else in the middle. Everyone else is expected to come to him and ALWAYS agree with his every opinion because, he's sick of making concessions for anyone else.....even though he hasn't even tried in years. He's actually surprisingly empathetic but only when he's in the frame of mind to be and that frame of mind is fleeting, at best.

I am at a loss. I worry sick about him. Obviously, I want to see him succeed in life. I want him to live a fulfilled life, enriched by friends and lovers and meaningful work and hobbies.....he hides from the world by playing online and watching TV and that's his life. I can't find people or intitutions that can/will help because we can't pay out of pocket. Since he's an adult, I can't find government assistance. I'm even more desperate for help now that ever. As difficult as the search for help has been, I always had hope that we'd eventually find something, anything. But now he's grown, on his own, and I have no say so....yet I see him making dangerous and destructive decisions. He desperately needs intervention.

When terrible things happen, like shootings or suicides, people always say, how did no one see the warning signs. I do see the warning signs and have been screaming for help for almost two decades and no one will help. I have contacted social services, the courts, the local police innumerable times....but all they did was continue to mis-treat him because of lack of funding. Please help!

My son is too young for me to be of any concrete help, but I am posting anyway b/c I understand how much harm can come when people who don't know what they are doing but think they do, mix in and make a child feel badly for being who he is,

I am sure more people will post with actual help. But I did want to say that.

Wow, you have really identified the key issue with our culture. We invest a ton of money in our jails and treat people who struggle with mental or emotional challenges like defective outcasts, and then moan and wail when we pay the price of our own faulty prioritizing. Have you read the essay, "I am Adam Lanza's Mother"? If not, see the link below (Click on "Huffington Post essay")--A very eloquent essay on this very conversation.

For your own son's sake, I would look deeper at the fact that he seems to be responding at least a little to the communal program with which he is involved. I have some acquaintances who faced similar issues with a very difficult son, and they finally sent him to participate in an outdoor-based program for young men with emotional and behavioral challenges, and he returned a completely different person. I will try to get in touch with them to find out the name of the program for you, and post it as soon as I receive a reply.

I am so sorry that you have met with such a lack of support while trying to give your son the good start in life that he deserves. Unfortunately, as much as the United States touts "family values," we don't offer much in the way of real support or encouragement to families who are really struggling. The most effective programs seem to lie with private nonprofit organizations, rather than the established social services or other government-related programs, but do some research to find out which ones are reputable, have good staff and adequate facilities.

Best wishes for you and your son.

Huffington Post essay

The sad truth is that if your son is 19 and not willing to commit himself to a program, he's an adult and will have to figure it out on his own; all you can do is try to point him in the right direction. I am so sorry you and your family are going through this - it's true that there aren't many options to help adults with disabilities and/or mental health issues.

Sometimes, charity support can help: Goodwill, Easter Seals, etc. Your son might find something there. If he loves nature, he might benefit from trying to find a job as a farmhand or in a nursery or lawn care service.

I don't know where you are located (country and state) but that often makes a difference when looking for services.

I would like to thank those of you who offered advice and support. It is refreshing to know there are people out there who understand. That's not something I'm used to.

Z has left the communal living/volunteer job, although he plans to return in the fall. In the meantime, he just got a job that offers employee housing. He's really excited and we are excited for him!

I would still love to hear back from Naturalist if you ever find out the name of that program.

I think momsparky may be on to something. He could never work at a typical nursery or lawn care service. He'd sooner spray his boss with pesticide than to put those toxins into our environment. But I wonder if he could find a floral shop or an 'all natural' type of gardening service. It's a stretch but maybe.

Another person contacted me personally, rather than posting on the forum. They suggested free online classes. That turned out to be a wonderful suggestion and I had no idea that they existed. I did very minimal research and found hundreds and hundreds of free classes through universities and private companies.

Thanks again, everyone!

Wow! That is quite an article. While my son is not as violent as the author's, when he was at his worst (8-12 years of age), he certainly did have violent outbursts. I have never read an account of another child that I could relate to so completely. I too was told that our only option was to have him charged with some crime because the court system had access to programs the general public does not.

That was the biggest mistake I have ever made! Z entered the court system at 12 years old. He was not sent to one of the wonderul nature based programs they'd told me about. He was instead sent to a residential hospital where he was bullied by other residents and staff. If he dared speak his mind (which he will always do in unfair situations - that a trait I adore in him) they would tackle him, pin him and inject him. He'd wake up hours later, groggy, in his bed.

After numerous incidents, I reported the hospital to social services. Since I no longer had custody, I was not allowed to take him out of that hospital. He remained there for months. I thought nothing had come from reporting them because the mistreatment continued and no one would listen to me.

I found out that they were found negligent. Two people were fired during my son's stay. I knew two people had left but I didn't know why. Apparently, the investigation continued. A few months after my son left, the hospital was shut down.

Don't ever make the mistake of putting your kids into the system! Z spent the better part of his childhood in residential treatment facilities. They were all abusive and neglectful. BUT they were all much, much better than the court appointed hospital.