ASD

No One Brings You Chicken Soup When You’re Depressed

There are approximately 1 in 4 people living with a mental illness worldwide. Think of that. It’s a huge number. And yet, I bet you’d have trouble naming more than one person in your life who has been diagnosed with a mental health disorder.

In 2015, discussions about mental health are still often done in whispers behind closed doors. “Don’t let them hear you” is something I’ve been told before. I’ve been hushed. I’ve been told the topic is inappropriate. I’ve been threatened to be “outed” about my history of mental illness (of which I speak and write about a lot, so I’m not sure what their goal was).

I’ve been told a lot of things about mental illness in my life. That it’s a choice. That I can control it. That kids and teens can’t have it. That I don’t look like someone with it. More recently, I was laughed at when I told someone I had ADHD, they then followed up with telling me only teenagers “get it” (it’s a communicable disease apparently), and women can’t ever have it.  I’ve been called oversensitive, selfish, ridiculous, and so on. Other loved ones with mental illness have been called dramatic, bored, and disruptive. (Thankfully, my family has always been nothing short of supportive.)

I feel strongly the reason so many suffer, often without treatment, is because we don’t talk about it. I don’t tell you what therapies or medications have worked for me. You don’t share what coping skills you can’t live without. We don’t open our arms and say, “I accept you.”

No one brings you chicken soup when you’re depressed. I’ve been part of community groups and have seen others’ involvement in their church groups. There is usually a call for meals or crocheting blankets or visits for those who are ill. Cancer comes up a lot, and other chronic physical illnesses, as well as when someone has had a baby. I’ve never heard a request made to bring meals to someone who just left rehab. Or to check in on someone who just changed their prescription. How welcome a small reminder of love it might be to receive a handmade, cozy blanket while laying in the ER at 3 A.M. as your world collapses beneath you. (Robot Hugs has created several perfect comics addressing much of this.)

Some people will laugh at the idea of people reaching out in these scenarios. Well of course, who would share that they just left rehab or that they take psychiatric drugs?

That is the problem. Why don’t we? Why is there still stigma? Why do we fear losing our jobs, freaking out our partners, having our kids taken from us? We stay silent. We know that if we say “I have anxiety and OCD,” “I am bipolar,” etc. that instantly people will assume to know everything about us. We suddenly become unreliable, unstable, and even unlikable.

How do we change this? Well, the first step is for people like me who can come out and speak about their mental illness, to do just that. I’ve been talking about it for years, and in the fields I work in, it’s not really an issue. So I can speak out, without fear of being blacklisted. The more each of us speak out, we can change minds. People will see real, actual people with mental illness, and not the often cringe-worthy portrayals of us on television and in movies.

From there, I hope others with mental illness can step forward, without worry of reprisals. Collectively, we can be so powerful that we can change how society treats us, how the media reports on us, how caretakers and hospitals deal with us, and how insurance companies value (or often harm) our health.

This week, John Oliver brilliantly observed all that is wrong with our system and how we treat those with mental illness in this country. You don’t have insurance coverage. Or the coverage you have only covers 30% of care that costs $1000 per day. Or your therapist doesn’t accept any insurance. Or you have coverage, but they’ll only allow you to stay inpatient for 48 hours. The hurdles someone with mental illness has to go through to have their care and medication covered are inhumane. We have to fix that.

We also need to get help to people before they are suicidal or living on the streets or addicted to substances. We wait until it is a dire emergency to take our heads out of the sand and say, “Oh! I guess you need a psych eval!” What other disease or disorder in the world is treated like that? Let’s wait until cancer has nearly killed you before looking at chemo as an option. Let’s hold off until your arteries are clogged enough that you may have a heart attack at any moment before we intervene. Let’s wait until your lung functioning is at 10% before we treat your asthma.

With the number of suicides happening each year, how can you say we are not in crisis? We desperately need to change this conversation.

So, what you can you, a family member, friend, or professional do to help? Just that, ask how you can help the person. Send them a text message. Mail them a card. Bring them chicken soup, or McDonald’s, or whatever else you know they’d like. Send them a care package. Listen to them.

Be present. Don’t pull back because you are scared or confused or you don’t know what to say. It is perfectly fine to tell us you wish you knew what to say. We get it. Just be here. I know for me, a lot of times, I don’t want you talk. I don’t even want to talk. My head gets so distorted and full of thoughts, I just want to watch a show and forget it all. Or play a video game and be someone else for awhile.

Don’t look at me like I’m weak. I’m not. I’m tougher than most people, don’t ever let mental illness make you think someone is not strong as hell. Respect all the work I put into addressing my mental health needs.

Don’t belittle people with mental illness. From dealing with insurance companies to showing up for therapy appointments to dealing with nasty side effects of medication to trying to care for yourself each day, getting through life with mental illness usually requires a ton of effort. Don’t ever disparage those efforts. You may not ever understand why, when your friend is having a rough spell, they cannot cook for themselves or don’t brush their hair. You don’t have to understand, just know that your friend would be doing those things if it were easy. And know that they probably shame themselves enough for not being able to do that stuff, so you can hold your judgment at the door.

Bring me chicken soup, ask if I want a hug, and build me a blanket fort. When I feel stronger, write letters, make phone calls, and shout into the megaphone along with me. Be there for the people in your life. Fight alongside them for better care and greater access to that care. Let your friends, family, and co-workers/employees know that you support and accept them. Open up a dialogue today.

What if we treated physical illness like we treat mental illness? Food for thought, from Robot Hugs.

What if we treated physical illness like we treat mental illness? Food for thought, from Robot Hugs.

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I Am Sounding the Alarm (on Autism Propaganda, Everyday)

[CN: ableism, murder, violence]

puzzleownToday is the last day of “Autism Awareness Month” and a lot of the news stories featuring autism will be tucked away until next spring. I’m sure a certain organization has had quite a successful “Autism Speaks Fundraising Month,” I’m sorry, I mean, April. Much of my discussion this month revolved around Autism Speaks. I simply can’t get away from them this time of year. From chocolate bunnies to baseball games to toys, many of you have seen your fair share of blue puzzle pieces and have probably inadvertently donated to them. I wrote earlier this month why I do not support Autism Speaks. Believe it or not, I have even more reasons.

When people ask me why I don’t like Autism Speaks, I explain their lack of focus on true advocacy for autistic people, the bulk of their funding does not go toward creating support systems and programs, and that their campaigns are dehumanizing and harm people on the spectrum. When people ask for specific examples of this, I first point to Autism Everyday. Some say I’m too stuck in the past, that was almost 10 years ago. Okay, then I Am Autism. When people mention that Autism Speaks apologized for it, I point to Suzanne Wright’s 2013 Call for Action. Whether I’m looking to a decade ago or to this year and their Sounding the Alarm documentary, Autism Speaks hasn’t changed their message. Since the public isn’t typically familiar with all of their rhetoric, I decided to break it down here. After reading this, tell me how I’m supposed to give my support to Autism Speaks. (more…)

The FDA Hearing and The Judge Rotenberg Center: What You Should Know

[CN: abuse, ableism, torture]

Photo: Canton Community TV

Imagine being electro-shocked for getting out of your seat without asking permission. Imagine that the reason you were being shocked was simply because you may become aggressive, and all of it was legal. Imagine wearing the electrodes on your skin 24-7, knowing you could be shocked at any moment. Imagine witnessing your peers be shocked as well. Imagine that all of this is ignored because the public barely, if at all, acknowledges your existence.

This isn’t fiction, nor is it in some far away place or just a shameful part of history. This is happening in America, in 2014. The Judge Rotenberg Center (JRC) uses “aversives” as part of their treatment program. Aversives can vary, but some of the aversives used at JRC include electric shock (which is not ECT), mechanical restraints, and food deprivation.  Aversives are used for behaviors the staff deem “inappropriate” or “disruptive,” ranging from blowing bubbles with saliva to not maintaining a neat appearance. In addition to electro shocks, JRC practices isolation and physical restraints as per multiple reports (including former employees and members of the New York State Education Department review team). This is a difficult read (major TW for severe abuse, death), but necessary if you want to truly grasp the horror that goes on at the Judge Rotenberg Center.

In 2011, the Massachusetts Department of Developmental Services (DDS) ruled that licensed facilities can no longer use “behavioral interventions” such as “electric shock, long-term treatment, or aversives that post risk for psychological harm” on new admissions. Essentially the treatment program JRC has long proclaimed as a success is now deemed unfit. The problem is, this ruling is only for new admissions. Any students previously admitted and receiving aversives as part of their program, however harmful, are still being shocked. This is troubling. Most people are unaware that there is no federal law banning the use of aversives, even shock devices, even on children, even in schools, even on people with disabilities. State laws vary and it can be illegal to use such aversives in some, but no federal law yet exists to protect our citizens against a human rights violation. There is a lot of work to be done here. (more…)

An Open Letter to Jenny McCarthy

Hi Jenny,

My name is Lauren and I’m a mom just like you. Well, aside from us both being mothers, there’s really not much we have in common. I suppose I’m one of those you are accusing of writing “blatantly inaccurate blog posts” about your position on vaccines. I’ve been writing about your vaccine stance since 2007, but I’ve only ever done so upon seeing an interview or reading your own words. My intent was never to spread falsehoods. You speak a lot about all those moms you’re helping. Well, there’s a big group of moms, and dads, who you have caused much frustration and irritation. Most of us didn’t have the media opportunities as you, so we took to our blogs. We did so to get our stories out, to dispel the vaccine lies you told, and to let the world know autism wasn’t all the horror story you shared with the world. We wanted to show others that recovery didn’t have to be the end-goal for parents and that those selling “cures” and quack treatments were simply modern-day snake oil salespeople. We blogged and spoke out, demanding human rights for autistic individuals and pleaded for much-needed resources. Many of us worked alongside other families and autistic adults to amplify our voices. Our goal was never to paint you in a negative light, we simply had to respond to your repeated rhetoric. Here I am, 7 years later, still doing so. Are you tired yet, Jenny? I sure as heck am. (more…)