Hey everyone -- Still in search of a member of the American Psychiatric Association to make a request on my behalf; and I'm issuing a call for a virologist out there to contact me (email@example.com). I have some embarrassingly basic questions to ask. Meanwhile, my query for help with understanding arsenic -- sometimes a metal, sometimes a metalloid, among other tricky properties -- paid off, as you'll see Saturday.
Sometimes our comment threads contain tales of such misery that they are hard to read. Like this one:
"I want to say that I have a 20 yr old Autistic son who has started to turn violent these past two years. He does not communicate at all! He used to use the bathroom in his pants, but now I take care of him fulltime as my job and have worked with him to sit and use it. For those who can't get a job because nobody will care for them while you work, in some states you can become a certified provider and get paid by the county to care for your disabled son, daughter, or family member. They need a waiver which can be difficult to get especially if they are under 18.
"I begged, cried, pleaded with the county to please push this waiver through because I was running out of resources and would have to give him up to the state because nobody could watch him while I worked. I have a 10 yr old typical developing daughter I have to support too and couldn't not work. I'm a single mother because I divorced their father three years ago, and he knew it would make my life more difficult by not helping me, hoping I would come back. Now, I believe his violent outbursts are due to him needing to use the bathroom. Maybe constipation, so I started giving him more fiber, and will sit him on the toilet until he has a bowel movement. This seems to calm him down once he has one.
"He has never went after anyone, but gets so upset that he screeches and rocks rapidly back and forth. I have to walk away sometimes for 5-10 min because it gets overwhelming. I hear comments all of the time about how it must be nice to get paid to watch your own son, but you walk a day in my shoes and see if you could handle it. Even for just an hour. I earn every damn penny of it, believe me. Some say he's my meal ticket because of this, but I'm not a lazy ass who lives off of welfare because I don't qualify for it and pay my own bills and go to school. I know I won't always be able to care for him, and need a backup plan. In ohio, the waiting list for a waiver is 2 yrs+.
"I didn't have that time to wait, so after all of the crying I did they put it through as an emergency waiver. Still, it took 6 months for all of the paperwork to go through. I thank God everyday for my mother who helped me. My parents told me they would help as much as they could once I got divorced. I just wanted to vent, and give information to people who has lost hope or almost there. I cry at least 3 days a week because of the stress, but I am strong and will get through this. Love to all parents/family who have a violent child/adult with autism because it takes special people to be able to live with a person with a disability."
This is the reality for many as their severely affected children get older, even as the image of Asperger-style whiz kids takes root in our society. Here's one that's less horrific but I'm sure wears people down just as much.
"It took me almost 7 months and several conversations with 4 doctors just to get one of them to sign a tax form indicating that my son still has autism. Why? Because he hadn't had an appointment with any of them in quite some time. We would need to schedule one, on a wait list for months. I resigned myself to the fact that I would miss the tax deadline that year (silly me, thinking this exercise would be a 15 minute thing). It took some intervention from my own doctor's office to get this resolved.
"Just a signature on a form from a medical doctor indicating that my son does still indeed have autism. You know, that same condition that the "best science" describes as lifelong and incurable? They had his original diagnosis in his case files. Every one had seen him in the past at some point. Apparently there's some rule out there that they would have to bend. I get it. But this wasn't an ask for meds, or for a diagnosis, or anything like that. It was an ask for a signature on a tax form, based on a known pre-existing condition, for f%@#$'s sake.
"But not one of them would sign without a complete re-evaluation. Can you imagine the horror? They sign, we get a tax break, then suddenly my son is somehow magically cured, the revenue folks find out they've been scammed, and all hell breaks loose. Yeah, could happen, I suppose (sarcasm intended). Doctors will not / cannot step outside the box, not for silly things like authorizing a tax credit, certainly not for allowing any kind of vaccine policy dissension. How can I have an honest discussion with them about anything that has "potentially career-ending" written all over it?
"The more they punish anyone who speaks out, the less I trust any of them."
"I am too is suffering ! My daughter is autistic she's 17 years old and she is abusive to me when she don't get what she wants and when she wants something it will be "right now " and then she hits me and she is big girl she's 170 lbs and I am 100 lbs . I already decided to put her in a group home I did talked to her case manager and it's getting more people involve and nothing is getting done I'm so tired if meeting after meeting
"I am a widowed for ten years now and I'm doing it alone . My son who is 23 years old is moving out cuz they have a baby and we can't trust her being around with my autistic kids . There's an incidence that when my granddaughter was two months old my autistic daughter was pulling her arms and I'm pulling her arm back so I screamed for help for my son and his gf so after fighting we finally got my graddaughter free from her so since then we kinda distance the baby from my autistics daughter I'm begging for them to put her in a group home but it's not going anywhere it's just all meeting and meeting and meeting/
"I don't know what to do right .I don't know where to start , who to ask for help . Her doctor told me to call the CPS cuz she saw her for several occasions when we go to her clinic that my daughter was so mad and hitting me and yelling at me .But I'm afraid to call CPS cuz I do t know what will be the worse scenario . I take care of her for 17 years I still want to be able to be part of her life that's why I think group home is best for her and me but I have no clue who can help me . I am so tired plus when she was young I take care of her dying Dad for 5 years .i used to say there's always light at the end of the tunnel but now it seems to me my tunnel is too long , and there's no light . I am alone struggling with my problem with my daughter although I got respite and hab thru DDD/
"I am so emotionally depress in everything .At this point it seems I'm so done but can't be done cuz no one listen to me that I need to put her in a group home . At first her psychiatrist said to me you can put her now and next thing I know that hope is gone . And her DDD liason said in a meeting that "we are not here to judge you but if u decide to put her in a group home let us know " and that's what I did I let them know next thing I know that hope is gone . It's like they are just giving me hope and then. Turn me down and that is most depressing . She sleeps good at night but she wakes up early and when she wakes up she is loud so I do what she wants so the rest in the house can sleep but there are times that I'm so tired and it's too early so she gets mad and pull my arm and if don't open my eyes she is poking my eyeballs .im 55 years old now and I'm wanting to have peace of life/
"I really don't know what to do ...if someone knew or could help me who is the right people to contact to start the paper work for her so I can put her in a group home please help me"
Finally: "I would like to ask for your advice. My son is 21 and on the spectrum. He has suffered abuse (including sexual) and neglect in the school system. I want to do what I can to raise awareness and to fight the system. It has been very hard to go through the things we've experienced. I am willing to do whatever it takes to contribute to help make things better. I became an expert in autism because I had to learn about it so that I could help my son.
"Thank you for any guidance you can provide."
We try to reach out to people who appear to be in need of more help, often referring them to biomed or advocacy groups we trust. But the need is great and the resources about what you'd expect for a catastrophe that can't be acknowledged. it's terrible to know people are hurting so much, especially given society's lack of understanding, genuine empathy, and commitment to face the truth and help sick kids.
Dan Olmsted is Editor of Age of Autism.