Friday, September 20, 2013

Autistic Warriors

Lori Miller Degtiarev
aquietweek.com

We have no autism warriors in this house. We do, however, have Autistic Warriors.

As the neighborhood mothers and children gather at the bus stop two houses down, two Autistic Warriors wait for their bus.

Autistic Warrior the Younger runs in circles and cries “Wooo!”

Autistic Warrior the Elder smiles. “Ahhhh, such ferocity! He fights a brave battle against the anxiety of imminent school bus arrival!”

At the craft store, Autistic Warrior the Younger dons fearsome headphones to shield himself from the horrifying banalities of cashier-induced platitudes.

He fights a more formidable battle another day. The sour faces of judgmental and prejudiced shoppers sneer. They expect silence and order as they purchase their bananas and frozen Celeste Pizzas. To defeat them, Autistic Warrior the Younger unleashes his greatest weapon:
“Hello! My name is Tyoma. Would you like to know a bit about me? I have autism, Tourette’s and OCD. I could read before I was two and I am profoundly gifted. Sometimes my Tourette’s makes me jumpy so I can’t be still. Thank you and nice to meet you.”
These are the Younger’s words–a script he wrote to relieve the inexorable internal pressure of not knowing what to say. He chooses when and where to use it.  More than one pretty brunette at Target has been startled by his impromptu delivery.  Scowling cashiers, previously confounded by chirps and defiant hops, soften their features.

His introduction often evolves into pleasant conversations about numbers or merchandise.  We hear, “My xxx has autism, too!” more frequently than you would predict. Once, a cashier with dangly earrings and sparkly eyes leaned forward and beamed, “My son is autistic, too.” I took a second glance, and noticed the warrior horns of a True Ally emerge, pointed and imposing.

Self-advocacy is potent weapon against Autistic Warrior’s foes, stigma and ignorance. And when the Younger Warrior is weary of the battle and chooses not to engage, I remember. People imbibe auras. Emit calmness and confidence, I remind myself, never shame or exasperation.

Self-advocates and allies speak in many voices; some soft and peaceable, others loud and ferocious. Regardless of volume or style, connecting personhood to autism wins every battle.

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Previously published at aquietweek.com

Wednesday, September 18, 2013

How Will the Affordable Care Act Affect People With Disabilities?

Come October 1, Americans will be able to start enrolling in Affordable Care Act (ACA, "ObamaCare") health insurance programs, which will then be implemented January 1st. Since health care policy is so complex, we spoke with The Autistic Self-Advocacy Network's Ari Ne'eman about specific advantages, opportunities, and sticking points of the ACA for People with Disabilities. In addition, The Autistic Self Advocacy Network has just released a policy brief on the impact the Affordable Care Act is likely to have on people with intellectual and developmental disabilities and what advocates can do to encourage state and federal policymakers to make the most of the law.

TPGA: What are ASAN's primary concerns about how the ACA will affect people with disabilities? Is there a significant component to how the ACA will affect people with intellectual & developmental disabilities?

Ari Ne'eman: We view the Affordable Care Act as a significant opportunity for people with disabilities, particularly people with intellectual and developmental disabilities (I/DD). Most people with I/DD have access to health insurance coverage through Medicare and Medicaid -- as a result, our main focus has been analyzing the impact of ACA on the quality of that coverage as well as the potential that ACA brings to facilitate access to private insurance for our community.

The Affordable Care Act's most significant impact for people with disabilities is the end to pre-existing condition discrimination, which is huge. It'll make it easier for the parts of our community that are not insured to gain access to coverage. However, just as significant is the insurance reforms that ACA mandates regarding benefits, access to providers and affordability. The law also includes substantial new options for states to take up regarding Medicaid home and community-based services. All in all, we think the law could have a major positive impact on people with disabilities, if properly implemented.

What would be some example of "properly implemented"?

That's a great question. With a law of the size and scope of the ACA, a lot of the implementation will depend on the decisions made by states and the oversight provided by regulators. Already, we're seeing significant differences in the decisions states are making about whether or not to expand Medicaid or set up their own health insurance marketplace. Those types of decisions have an impact on the availability and type of coverage available in those states.

One of the issues we covered in our policy brief is that the Department of Health and Human Services (HHS) has decided to leave the decision about what constitutes Essential Health Benefits -- the minimum health services all insurance plans must cover -- to each state instead of establishing a uniform federal definition. That means that a lot of discretion is going to be left to state choices about what constitutes the bare minimum a health insurance plan must include. Prior to that decision, we in the advocacy community had hoped that a single federal definition would be put in place.

Another area of interest is that ACA creates a number of opportunities and incentives for states to go above and beyond what they're required to, particularly regarding services for people with disabilities. For example, the law authorized the creation of the Community First Choice (CFC) State Option, a new Medicaid option that offers states that eliminate waiting lists for certain kinds of disability services a 6% enhanced federal match for the costs of those services. Basically, this is the federal government stating that if a state is willing to make certain types of disability services an entitlement in that state, the feds will pick up an additional 6% of the costs in return. The CFC and other similar state options were some of the things that ASAN and other disability rights groups, like National Council for Independent Living (NCIL) and ADAPT, advocated for during the health reform debates several years ago

So, both for good and for bad, state policymakers are going to have a lot of latitude in deciding how to implement this law. That's why we produced this policy brief, to give advocates the information and tools they needed to push for the right steps to be taken.

Will ACA reforms affect long-term care and support costs for people with disabilities?

Yes, in a number of ways. First, the law has already imposed a number of reforms on insurance companies that should reduce costs for people with disabilities and family members. It prohibits lifetime dollar value limits on covering care and services, it has prohibited denying coverage to children with pre-existing conditions and it has prohibited insurers from arbitrarily rescinding coverage. In 2014, it will prohibit annual limits on the dollar value of coverage and make it illegal to deny coverage to anyone, adult or child, based on a pre-existing condition discrimination.

The law also sets up a system of health insurance marketplaces that will open for enrollment next month on October 1st, and will offer coverage taking into effect on January 1st. These marketplaces will also offer multiple opportunities for people with disabilities and family members to reduce the cost of care. First, subsidies will be available to help uninsured Americans purchase health coverage for people making between 100% and 400% of the federal poverty level. Second, the marketplaces will make it easier to compare the cost and quality of different kinds of health insurance plans, sort of like an Expedia-type website for health insurance. Third, the marketplaces will sort each plan into "metal levels" of Bronze, Silver, Gold or Platinum, indicating the estimated percentage of the cost of care the plans will cover as compared to your out of pocket costs. So, for example, if you have a Platinum plan, it will be expected that your plan will likely cover about 90% of the actuarial value of the cost of care. If you have a Gold Plan, 80% and so on.

Finally, the new Medicaid state options will incentivize states to expand Home and Community Based Services -- the ACA sets up a number of new options for states in this regard, including the Community First Choice State Option, the State Balancing Incentive Program (for states that have historically lagged behind in de-institutionalization) and the re-authorization of the already highly successful Money Follows the Person program.

What is a Qualified Health Plan as defined by the ACA?

That's a great question. To be included in the Marketplace, insurance plans have to meet certain minimum requirements -- this is called becoming a Qualified Health Plan (QHP). The most commonly referred to is to include certain Essential Health Benefits. As mentioned earlier, this is something that states will have a lot of latitude to determine the minimum requirements around, as long as they include benefits in each of the ten categories set out by the law. However, becoming a QHP also includes minimum requirements around provider network access ("How easy is it for me to find a doctor or other service provider who will serve me?") and other quality assurance provisions.

ACA also has introduced a new broad based requirement on all insurance companies, which took into effect last year. It's called a Medical Loss Ratio. What it means is that if an insurance company spends less than a certain percentage of the premiums it receives on health care -- 80% in the individual market, 85% in the group market -- it must refund its customers until that ratio comes back into alignment. It's already led to many consumers receiving money back from their insurers.

What are some of the disability community's concerns about Essential Health Benefit Packages as defined and implemented under the ACA?

One of the biggest ones is to what degree habilitative services -- things like Occupational Therapy, Speech Pathology and a number of other interventions -- will be required within the Essential Health Benefits package. The law instructs states to determine the Essential Health Benefits package in relation to a state-selected benchmark plan -- essentially, states need to pick a plan from a series of options provided by the federal government and then require all plans on the Marketplace in relation to what is available in that plan. However, habilitative services are generally not covered by most private insurers. But the law requires their inclusion in the Essential Health Benefits package, as they are one of the ten required benefit categories. We feel the disability advocacy community in each state needs to carefully monitor how their state manages that contradiction and push for a robust habilitative services benefit.

So people with disabilities are still at risk of falling through the cracks under the ACA and Medicaid expansion?

Regardless of what choices states make in implementation, the basic minimum required under the ACA is going to be a vast improvement over the status quo prior to the law's passage. However, we want to make sure that all potential mechanisms in the law to enhance the quality of health care available for people with disabilities are utilized. That's going to mean putting pressure on state governments with respect to how they choose to implement ACA, and pressure on federal regulators to provide meaningful oversight. Just because something is better than what we had before, doesn't mean we can stop advocating for all of our needs to be met.

What are the benefits of allowing people with disabilities who are Medicaid beneficiaries to access Qualified Health Plan coverage from the newly established exchanges?

I think the biggest benefit for people with disabilities regarding accessing the private insurance market is better access to providers. Medicaid is a great health insurance program as far as it's scope of benefits, but it is far worse than private insurance when it comes to the number of clinicians and other providers that will accept it. That's because Medicaid pays providers much less than both Medicare and private insurance do. If we can offer people with disabilities greater access to the private health insurance market, we can make it easier for people to find a doctor and even pick from multiple options.

Why do people with disabilities need to pay particular attention to the issue of provider adequacy?

We've put a lot of time and energy into ensuring that people have access to health insurance, which is great -- but it's not very useful if people still don't have access to health care! Health insurance is a payment mechanism. For it to work, you need to have providers that will be willing to accept the payments and who are qualified to provide the services you want from them. Whether we're talking about the Medicaid system and long term services and supports or the private insurance market and acute care, we need to pay attention to provider access. It is a critical and under-acknowledged area of public policy.

How does the ACA stand to benefit people with disabilities, in terms of employment?

Health care and employment have always had a close inter-relationship. Many people with disabilities who want to work and are able to find jobs either don't accept them or keep their wages lower than what they could otherwise earn so that they don't lose access to public health insurance, eligibility for which is linked to income support programs like Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). This is because as of the moment, our private health insurance market makes it either extremely expensive or impossible to get coverage if you have a disability. As of 2014, pre-existing condition discrimination will end and that will change. We think it will make it easier for people with disabilities to shift off of income support and access the private insurance market.

That won't be the end of our need for either income support or public health insurance, however. The policy brief outlines a number of ways that state policymakers can help offer hybrids of public and private insurance coverage options for individuals who still require benefits that are only available through Medicaid or who are not able to earn enough to totally replace income support payments. We believe that this part of our community should also have access to the expanded provider networks available under the plans on the Marketplace.

So that expanded provider network access will vary by state?

Yes, particularly because different states may make different decisions about how much access to the Marketplaces people who are on Medicaid will have.

For example, we are urging states to utilize a long-standing state plan option called Section 1905(a) to buy people with disabilities now on Medicaid health insurance plans from the marketplaces and then provide wrap-around coverage to basically have Medicaid cover everything that private insurance doesn't. We think this could be a Win-Win for everyone involved. People with disabilities get health insurance coverage with better access to providers, but also have Medicaid to cover the benefits that private insurance doesn't include, as well as pay for co-pays and other cost-sharing present in private insurance but prohibited under Medicaid. States get to spend less on acute care costs, because the ACA makes it illegal for health insurance companies to charge people with disabilities more for coverage. However, there's no guarantee that states will take that option - many may find it administratively complex or may be reluctant to shift large numbers of people with disabilities into the new Marketplace system, for fear that it will increase costs for the general population.

So the decisions that get made by state policymakers will have a big impact on whether or not people with disabilities get to make the most of the opportunity offered by the ACA.

How can the Department of Health and Human Services help ensure that the ACA benefits people with disabilities?

Three things:

1) Give states the technical assistance necessary to make sure they use Win-Win opportunities like expanding Medicaid and what we're recommending around 1905(a). We think this would benefit everyone involved, but it's a new thing and states are often afraid of new things, particularly when so much else is changing around them.

2) Provide meaningful oversight on areas where states may be inclined to cut corners, like with respect to meaningfully monitoring access to providers in private insurance or the determination of what the minimum Essential Health Benefits package will be. We need state policymakers to know that if they don't take into account the needs of people with disabilities, the Feds will be looking over their shoulder and ready to step in.

3) Don't give away the farm on Medicaid flexibility. When the ACA was challenged in the courts, the Supreme Court ruled in NFIB (National Federation of Independent Businesses) v. Sebelius that it was mostly constitutional -- with the surprising exception of the provision that required states to expand their Medicaid systems to cover childless adults up to 133% of the federal poverty level. This turned what was intended to be a mandatory part of the ACA into a state option. Now, many states are bargaining with the federal government, saying that they will take up the option if the feds give them flexibility regarding other aspects of the Medicaid program, such as allowing them to require greater cost-sharing from Medicaid beneficiaries or cut back on services that were previously considered required. While we want states to take up the Medicaid expansion, we think it's important that the federal government protect the integrity of the Medicaid program.

What sort of actions do disability advocates need to take, to ensure that the ACA benefits people with disabilities to the fullest extent?

Talk to state policymakers, particularly insurance commissioners and Medicaid directors, and pressure your Governor's office and state legislators to do the same. We need them to hear from you about the importance of making the most of the ACA by doing things like coming up with a strong definition of Essential Health Benefits and taking up new Medicaid options like the Community First Choice state option. Many of the people with decision-making power are incredibly busy, so the issues that have the loudest and most capable constituencies are the ones that get acted on. We need you to be a voice for meaningful implementation of health reform in your state. This policy brief is designed to give you the tools to make that easier for you to accomplish.

Thanks so much for having me, and I encourage your readers to sign up to learn more about ASAN's upcoming policy work by joining our mailing list or becoming a member of ASAN. You can do both at www.autisticadvocacy.org.

Friday, September 13, 2013

Autistic March on Washington!

Samantha Bodwell
autismacceptancedigest.blogspot.com

We came, we saw, we marched! Yes, ladies and gentleman, a small and very passionate group of Autistic adults attended the first event of the 50th Anniversary of the March on Washington, on Saturday August 24th, to highlight the needs of the Autistic Community.

The week-long anniversary celebrations kicked off on Saturday and featured speakers of the likes of Al Sharpton and Martin Luther King, III. The anniversary festivities began at 8:00am with a rally at the Lincoln Memorial which included a speaker from Planned Parenthood, various reverends from across the country, and other individuals highlighting Civil Rights issues, all of whom electrified the assembled masses along both sides of the Reflecting Pool. Following the rally there was a march to the newly erected Martin Luther King, Jr. Memorial.

I organize a group for my fellow Autistic adults in the Washington, D.C. area called the Adult Autism Spectrum Friends; some of our membership attended this momentous event. We braved the over-crowded subways, co-mingled with the smells of perfume, cologne, and humanity, and the many road-closures, to be a part of history -- and I even suffered a touch of heat stroke -- but our Autistic voices were heard!

The Washington Metro Transit Agency counted just over 450,000 subway rides during the kickoff festivities on Saturday and that number does not even include the hundreds of buses that brought some attendees to the march. This will give you an indication what we braved for the Autistic Community; the 50th Anniversary of the March on Washington was HUGE!

On the main website for the anniversary march Disability Rights, more specifically Autistic Rights, was not among the reasons listed for why people should march. I thought that this was an important Civil Rights issue that needed to be addressed, it should never have been left out in the first place!, so we marched. With 2-sided poster board signs held high above our heads and wearing badges that stated that we were Autistic we entered the fray. Each side of our signs bore a crucial message: one side stated Autistic Rights ARE Human rights, the other Autistics Deserve Equal Rights. We pressed through the masses. Onlookers chanted the slogans audibly as we passed. It was very exciting!


 At no time did anyone say anything derisive to us, instead it was always, “my son is Autistic,” “my granddaughter is Autistic,” etc. People shouted things like “YES! You are right!” and “That is so true!” when they read our signs.

A goodly number of March on Washington attendees photographed our signs, some of whom requested that we pose for photographs while holding our signs, even the mother of an Autistic child had her son pose with us, although I am not sure he wished to be photographed with strangers just because they too were Autistic.

Anytime we felt that the word “disabled” or the word “Autistics” deserved to be part of a speaker’s oratory, we passionately shouted its addition. When it came time for one of the speakers to talk about getting rid of minimum wages and instead replacing them with living wages, I shouted that we first need to end the practice of subminimum wages, my fellow Autistics agreed whole-heartedly.

Many disabled people have been taken advantage of all due to Section 14(C) of the Fair Standards of Labor Act of 1938 which legally allows employers the right to pay their disabled workers less than minimum wage, in 1938 it was believed to help the disabled, but it certainly does not now, the standard of living does not allow for people to survive on a pittance. H.R. 831: Fair Wages for Workers with Disabilities Act of 2013 was introduced this year and calls for the “phase out [of] special wage certificates under the Fair Labor Standards Act of 1938,” it is those special wage certificates that allow for the disabled to legally be paid subminimum wages by their employers.

In addition to be being photographed at the march, a couple of us were even photographed away from it, just because we were carrying our signs and being our normal Autistic-selves. What with all of this minor celebrity we started to feel a bit like a cardboard cutout of the president that tourists wanted to have their photos taken with. After every photograph was taken people felt the need to touch us, in that stroking “you are so brave,” “you poor dear” sort of way or attempted to hug us, none of us could figure out why they felt the need to do so, but if we were to dwell too much on this it would surely diminish the success we shared.

All in all our Autistic March on Washington was a rousing success; more people have our needs in mind! And this further proves that it is not the size of the group assembled that determines the success of the action, but the weight and strength of the message they wish to share.

I close by saying, always remember that Autistic Rights ARE Human Rights and that Autistics Deserve Equal Rights! Also, I urge you to ask your congressmen to push for the deletion of Section 14(C) of the Fair Standards of Labor Act of 1938 by asking them to support H.R. 831: Fair Wages for Workers with Disabilities Act of 2013; even the disabled deserve a Living Wage! Like any other minority group, Autistics have Civil Rights that must be fought for and upheld.

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Previously published at autismacceptancedigest.blogspot.com

Wednesday, September 11, 2013

We Do Not Cross the Line

Jennifer Byde Myers
jennyalice.com


Just after the recent murder of Alex Spourdalakis, yet another parent has attempted to murder her autistic child.

Services to help families are not available to the degree they are needed, often leaving parents of children with intense needs feeling abandoned, depressed, suicidal and, in some cases, homicidal.

I just sincerely wish these conversations could be separate. They must remain separate.

I know how it happens, how the conversations seem like they should go together. As parents of kids with intense needs, medical, mental or physical, we are each slogging through life, with easy days and hard days and harder days, until something really bad happens, then we are triggered to say to the world, "See, look how hard this is. Why doesn't anyone care?" But the problem is that caregivers say this at the very same same time that someone was trying to kill their child. The minute you tie those ideas together the conversation changes into, "See, look how hard this is. We told you. Have empathy. The poor mom was really struggling. You can't blame her."

But you can. You must blame her. We must unitedly and unequivocally say that we can blame her because she tried to murder her child, and those other caretakers, they actually killed their children. We can't "cut her slack" because she was having a hard time. We can't even cut her slack because she had been injured by her child, badly. We cannot say, "We understand why she did it. You know her life was so hard because of her daughter,  because she didn't have enough help, because she was burned out, because..." Because what? So what do you mean exactly? So it's understandable when there are days or weeks, when life is hard...

Like when my son didn't rest...for years?

He didn't sleep, he screamed. He bit himself until he bled. He bit us and we bled. He lashed out. He threw himself to the ground. He broke my nose. He gave black eyes to me and one to his grandmother. We went to doctor after doctor, and therapy after therapy to no avail. We had no medical insurance for him because he had pre-existing conditions. We paid the bills with credit cards. Our life fell apart a little bit, a lot of the time, for several years. There are parts, emotional parts, that are still raw. It was very hard. I was very sad, and hope was hard to find on most days. So because it was hard, because almost every hard thing led back to my precious boy who was beside himself writhing in some kind of anguish that no one could identify, unable to speak to us and tell us what was wrong, so it would have been okay to kill him? Of course not.

NEVER OKAY.

...and I know some of you know her, that mother, and maybe I'd feel differently if I did, but I don't. I can tell you this, if my best friend tried to kill her son, you can bet your ass I'd want her in jail. I would feel horrible. I would be certain that I had failed her as a friend. I would mourn the loss of my friendship, but those things are about me, and it would not change the fact that we cannot even intimate that there are excuses as to why we can kill our kids. I would want her in jail, held accountable without question. We can add in all of the complexities of our weak family support systems, and lack of services, and all of those complexities may be real and truly horrific, but they do not, ever, explain away the fact that this woman tried to kill her child.

We can't cross that line if we want everyone to value our kids and give them an equal place in society, because in every other way that's what we ask people to do. We want our children to have a place in a proper educational setting, and we want them to be able to go to the movie theater and grow to have meaningful work, and a safe place to live, and all sorts of basic rights. Then when it comes to the most important right, the right to live, that's where you cross the line?

I thought we had all decided that we don't want our children to be  marginalized and put to death because they do not contribute enough to society. Don't we want our children to be treated as deserving to be called wholly-human? A human who has every right not to be murdered because of their neurological makeup? When we tie the two conversations together it glares at me, and I am not autistic, so I cannot imagine what it would feel like to be autistic and read that a parent could, "see how that could happen." I don't think most parents think that's what they are saying when they offer empathy, but even said eloquently, this is all I hear...my autistic child is not as valuable.

but there can be no excuses.

We Do Not Cross the Line.

A version of this essay was previously published at jennyalice.com. 

Tuesday, September 10, 2013

Where Was I When Kelli Stapleton Needed Help?

Beth Ryan
www.loveexplosions.net

So, as an administrator of Parenting Autistic Children with Love and Acceptance, I’ve seen a lot of questions from parents asking, “Where were you when Kelli Stapleton needed help with her daughter, Issy?” And, “Did you donate to Issy’s treatment?” These questions are asked of Autistic activists and parents of Autistic children who are outraged at the attempted murder of Issy by her own mother, Kelli. Those that have zero empathy for Kelli. Those that believe that parents that would murder their own disabled children are as accountable as parents that murder their own non-disabled children–and that the prosecution of these criminals should reflect that without exception.

Oh no, you do not get to lay the blame of this massive tragedy at my feet or at those of Autistic activists.

Let me start by telling you where was.

I was first, and foremost, taking care of my own children. Taking care of myself. My children will always come before everything else. If that makes me a bad person, so be it.

I had never heard of Kelli until Kelli tried to kill Issy. But had I heard of her, I can tell you that I would not have “liked” the Facebook page which was designed, as best as I can tell, to raise funds for ABA treatment for Issy. I would have especially not liked the page if I had seen this video of Issy having reacting to being told to have “quiet hands and feet” after her own mother told her that she was going to be her “worker” for the day. No, no I would not like that. I don’t like that.

Had I known of Kelli and Issi, I might have tried to reach out with suggestions that, perhaps, the intervention style employed, ABA, was one of the causes of Issy’s physical reactions. But honestly? Probably not, because I have made suggestions of a similar nature to parents in Kelli’s clique and have been attacked.

Had I known of Kelli and Issi, and seen Kelli’s blog, I might have suggested that Kelli not use language which degraded and humiliated Issy. I might have indicated that I thought it was extremely disrespectful to Issy, for Kelli to regularly characterize her as “violent” on her blog. I might have said that the language she used to describe her own daughter was hateful. But I suspect that I could not have worded this in a way that would have incited unrest from that same clique. So I probably would have decided against that because I haven’t been able to do that effectively in the past.

Had I known that Kelli was on the brink of trying to kill Issi? I would have reported it to authorities. I would have done anything in my power to stop that. But as I did not know Kelli, I will have to leave that question at the feet of her friends who had a more intimate understanding of what Kelli was thinking.

As far as Autistic activists go … I cannot account for their time and do not feel that this is the question that we should be asking. I know that many adult Activists spend countless hours warning against the dangers of abusive therapies and interventions. I know that they spend countless hours responding to blog posts similar to Kelli’s and are met with angry hostility. And I know that adult activists, many who live on disability, do not have funds to spare for treatments for a child.  Especially the same treatments that they received as children which caused them PTSD -- from which they continue to suffer.

So I am reading these questions. And deleting them on my facebook page. And I am reading blogs written by Kelli’s friends and the comments that folks are making on these blogs.

And I am disturbed.  Disturbed to see so many parents of Autistic children saying, “this could be me.”

So what am I doing about that now? Well, I am posting a list of ways for parents who are thinking about harming/killing their children to seek crisis intervention on my parent page. Because, yes, if you can actually see yourself in this situation -- one where you can imagine yourself actually harming your own child, you are already knee deep in crisis.

And when I come across these comments, I will report them and hope for the best. I’m not a crisis interventionist. That’s all I am qualified to do.

I wish that I could do more.  But unless I know the person, that is the best I can do. And I probably will never know a person who would even conceive of killing her child. Why? Because I tend to choose my friends carefully and would-be murderers probably won’t make the shortlist.

So to those asking where I’ve been, I hope that answers your question. And I hope that the fact that I have taken the liberty of answering where I will be when I encounter comments of those that are already on the road to killing a child will render future questions, from friends of attempted murderers attempting to lay the blame on anyone but the murderers and those that had intimate knowledge of the plight of endangered children, unnecessary.

I hope that friends of Kelli will stop asking why people are trying to “vilify” Kelli and come to understand that Kelli is already a villain. No vilification necessary. And maybe, just maybe, they will be in a better position to spot other potential villains among their ranks.

Monday, September 9, 2013

Adult Responses to Autistic Children Lead to Escalation or Calm

Brenda Rothman
mamabegood.blogspot.com

An adult's response to an autistic child's upset is the single, most important factor in whether the child's upset is escalated or calmed.

We must remain calm. We must understand -- at a gut level -- that the child's reaction -- whether to yell, hit, bite, or flail -- is frustration and that is all. As "disorientation is one of the least bearable of all psychological experiences" (Neufeld & Maté), we must understand that children are disoriented by their emotions, frustrated by communication. It is not personal. It is not hate. It is merely frustration.

When we begin to feel overwhelming emotions in response to our children's actions -- like sadness, upset, anger, fear, or resentment -- we need to calm ourselves for the immediate moment. However you need to do that -- by breathing, talking to yourself, repeating a mantra. For the long term, you will need to do the hard work of exploring those feelings and the reasons behind them.

Our physical response is just as important. Because this is frustration, respond with calm and soothing. Our children are not trying to hurt us. If they see us reacting in disorienting ways -- like crouching, putting up our hands as if to ward off hits, or crying -- it will frighten them even further. Trying to control our child's behaviors through physical restraint also escalates the situation. Imagine how you would feel as a child if you were already disoriented and your parent's actions looked even scarier. Instead, we should calm, soothe. Remember that we are our child's compass.

Know in advance what soothes your child. Physical things like running water, a fan, their bedroom, low light, a tent, blanket, a stuffed animal. But also, let them stomp, stamp, slam doors, hit pillows, throw stuffed animals -- there are many safe outlets for frustration. And they do need outlets. We can't just clamp down on them and negate all outlets for them. Imagine if you couldn't vent - you'd feel like exploding.

One thing that I have to do regularly is keep everyone safe. I say, "I'm so sorry, but I have to keep everyone safe. I know it's upsetting, but that's my job as a parent. And you know, parents have to do their jobs. Sorry, that's just what I have to do." And I keep everyone safe, as keeping hands off each other. Without any type of punishment like ignoring, or separating, or high emotions, or anything. Just sigh, sorry, this is what I have to do.

The other thing I do regularly is playful parenting -- stopping the actions but in a very playful manner so it doesn't escalate. Like very lightly saying "oh, ho, ho, mister, are you teasing your sister? Do you want some love taps, too?" or "I saw you do that, you Wile E. Coyote, you." If you haven't read the books Playful Parenting and Hold On To Your Kids, I highly recommend both for ideas of discipline that are not punishing or isolating.

After they've vented their frustration, you can try getting their sadness out. That's the real emotion underneath frustration -- because something isn't working and that's upsetting. After our children have experienced a big emotion, they often need a safe way out. Silliness is one way. "That stuffed toy smells terrible! Did he toot?" We often have to just try different ways of helping.

This fact that the adult escalates or de-escalates the child's response is critically important. We have to realize how we are a compass to our children. We also need to hold the adults in our children's lives accountable for their reactions and how those reactions escalate our children's reactions. Teachers, therapists, behaviorists - do they put their hands on your child, even to direct them? Do they give your child ways to vent? When the child gets frustrated, are they forced to sit back at a table and do a task or are they given recovery time? Are they labeling your child violent instead of frustrated? Are they restraining, ignoring, secluding, punishing your child?  Are they demanding too many things?  Are they requiring quiet hands, quiet feet, quiet body?  Are they spending directing and redirecting all the time? Are they blaming the child instead of acknowledging their own role in the escalation?

Our children react to being forced. They react when there is too much direction and too little connection. They react with frustration when the relationship isn't working. They react with their own will as they try out independence. When our child is not treated as her own person, with her own preferences, thoughts, opinions, and boundaries, she will put up resistance. This is a healthy part of growing up.

If the therapy our child does sets us up for conflict, no matter how beneficial we are told it is, we need to refuse it. If we are told our child is "violent" simply because he reacts to force with negative emotion, we need to reject that. We parents have the right to demand peaceful, loving, connecting ways to raise our children.