National Council on Severe Autism

May 27: Learn from the best! NCSA webinar "Insurance Coverage for Treatment for Severe Behaviors at Any Age," featuring the nation's top experts. 10am-noon Pacific; 1-3pm Eastern. FREE. Details and registration: https://www.ncsautism.org/severe-behaviors-insurance

When he outgrew cute The looks changed from compassion to concerned Towards him And towards those who supported him. And sometimes disgust... Overshadowed concern As he stubbornly clung to his ways. When he outgrew cute The calls increased Calls desperate for help Desperate for summer options for a 16 year old in diapers Desperate for respite Desperate for adaptive equipment Desperate for anything that would assist a non verbal teenager Or anyone And the voices were silent Or they whispered Sorry. Sorry. Sorry. When he outgrew cute His movements were no longer celebrated But instead feared Violent head banging Aggressive pulling Dangerous optimism With the strength of a man And not that of a child. When he outgrew cute The damage began Damage to walls Damage to others And damage to himself And this damage Wreaked havoc on more than just objects It wreaked havoc on psyches as well. When he outgrew cute The walls caved in And the house became a tomb And the isolation suffocated those within As they desperately yearned to belong To something Somewhere. When he outgrew cute Milestones were no longer encouraged And his future grew dim And symptoms of PTSD set in For those who loved him & had been Rattled by his screams for years. When he outgrew cute Mood altering drugs were doled out like candy One option after another For him And also suggested for his caregivers. Drugs to dull the pain Drugs to pacify Drugs to silence the demons When he outgrew cute She outgrew herself As every ounce of strength was poured into him And she got lost in the daily grind Lost in the sleepless nights And invisible behind the never ending tasks When he outgrew cute She outgrew silence And she raised her voice To join the cacophony for change And her battle cry rose A better tomorrow! For him And for those who loved him. Because when he outgrew cute He outgrew society And that’s simply not an option. For anyone. Anymore. When he outgrew cute She found the strength to move forward To move towards advocacy And move towards hope. She found the strength To keep going And keep growing And she found the strength To just keep livin.

Yesterday I enjoyed a lovely conversation with a mama of a 20 year old total care daughter. As we chatted, I was quickly reminded that my Luke will be turning 1...7 this summer & as of yet, we don’t have a long term plan. Sure, I have aspirations & dreams but nothing cemented in stone. So instead of being a sane individual & prepping for a move, or writing a book I’m under contract for, or launching a current book (or non-profit work or being present for my 8 children), I spent the day obsessively researching how to become a Medicaid provider & start a residential facility. Of course I did. I looked at vacant land, at huge pole barn kits that could be sectioned off into living quarters, duplexes, cheap commercial properties that my handy husband could renovate, & then I began to crunch numbers which only resulted in disappointing results. It’s a HEFTY price tag to have your loved one cared for 24/7 (try $20,000+ a month for ONE caregiver). My point is this. As many of you prepare to launch your high school graduates off; full of anticipation & hope over a world of possibilities (& I’m doing this as well with my two oldest), there are those of us freaking out about the future of our unique kiddos. In fact, I believe most of my grief with Luke has nothing to do with his diagnosis but much more to do with the uncertainty of his future & ours. If someone would say to me, At 22 years old he will move into this amazing residential facility where he will be well loved & cared for. That would work! But no one says this to parents like me. We don’t hold our breath for admittance to college at 18 years old. We don’t hold our breath for admittance to anything! No, we hold our breath that there will be an opening somewhere that provides peace to our souls before our child turns 40 or before we die. Whatever comes first. We live for years in fear over what the future holds for us & for our children & me being me, I’m sick of the fear & in true Jessica fashion decided to take the bull by the horns & try to control the situation (which may or may not work we shall see). It is what it is. But please, remember us. In the middle of the big hoopla’s & parties & ceremonies to celebrate the typical ones, remember those of us who aren’t in a major celebratory mood or have much whoop de do going on because there aren’t any options for our grown kiddos. And you know what, then do something for families like ours. As we show up to celebrate your kids, advocate for our children. Vote for change. Donate to the organizations making a difference in your community. Our societies are only as healthy as our caregivers and that includes caregivers of the typical & caregivers of those like Luke. Just keep livin.

From New Zealand: A new report gives a voice to parents’ anxiety and desperation around their children’s futures.

Survey deadline June 30: Living Safely with Disabilities and Special Needs. The researchers are looking for diverse representation of disability caregivers, self-advocates, emergency responders, and educators. These are the links to the survey in English and Spanish. English: https://www.surveymonkey.com/r/LivingSafelyWithDisabilities Spanish: https://www.surveymonkey.com/r/LivingSafelyWithDisabilities You can help guide efforts and recommendations to improve safety educa...tion and information to more appropriately and respectfully include and address the needs of people with disabilities. This survey should take about 10 - 15 minutes to complete. It is completely anonymous, so please answer honestly and to the best of your ability. No information that can identify you is collected. Thank you! See more

For our friends in NY: OPWDD Invites People Receiving Supports and Their Families to Help Plan the Future of Our Service System. The public forums will provide you the chance to give input on OPWDD’s strategic priorities, the use of funds from the American Rescue Plan and the development of the agency’s 5-year Statewide Comprehensive Plan. OPWDD urges self-advocates, family members of people with developmental disabilities, advocates, and other interested parties to take part...Continue reading

Why it's time to split the autism spectrum. The Podcast by KevinMD. "Legislative advocacy has become difficult for the severe autism population since the DSM-5 lumped Asperger’s syndrome with autism spectrum disorders (ASD). Further complicating the matter, a new population recently emerged who identify as autistic without having a diagnosis from a qualified health care professional. Without a clear distinction for various parts of the spectrum, we are comparing apples and ...oranges. We will not render meaningful information, and we make it difficult for the entire spectrum, but especially for those most affected." Irene Tanzman is a patient advocate and author of Abie and Arlene’s Autism War. Jill Escher is president, National Council on Severe Autism (NCSA). They share their stories and discuss the KevinMD article, "Why health care professionals must call for splitting the autism spectrum." (https://www.kevinmd.com//why-health-care-professionals-mus) See more

Disabling the ones that need help the most. It seems as if a lot of advocates are afraid to speak out about some of the realities families are facing that are c...aring for a loved ones with very profound needs. Media refuses to cover it, legislators put it on the back burner and some self advocates ridicule those who reveal these realities. Well, I’m not afraid to say what needs to be said and call out those in our society that ignore, ridicule and write off these situations. THOSE WITH THE MOST PROFOUND NEEDS ARE LANGUISHING WHILE WAITING FOR HELP. We received multiple apologies from agencies and program directors after we shared our story. But was those apologies sincere after seeing the same story play out again and again through out our state and our nation? I’m going to be brutally honest about this. We have been sent messages, emails, videos and pictures of what other families are facing and I’ve cried, not slept for days at a time, been enraged and felt overwhelmed by feelings of discouragement. WE ARE NOT SUFFICIENTLY ADDRESSING THE ISSUES, PERIOD! When families beg for help for months, even years and can’t get basic help, this is wrong. When behavioral disorders are deemed as needing treatment ASAP and families must fight through bureaucratic red tape for years, this is wrong. When some advocates are allowed to speak for everyone and efforts are made to silence those that don’t agree with the narrative, this is wrong. When programs are allowed to serve only those that don’t have as profound of needs as others, this is wrong. When crisis response is anything but that and leaves families fending for themselves during severe behavioral episodes, this is wrong. When families are told the only way they may receive help is to give up custody of their child, this is DEFINITELY wrong. When couples are told that they may need to get a divorce because it’s easier for single parents to get help, this is wrong. If programs are shuttered that these families depend upon and replaced with community options that can never support the needs of those individuals, this is wrong. If treatment centers, intermediate care facilities and acute treatment facilities are labeled as institutions and phased out while leaving the ones needing those levels of support without any options, this is wrong. Many don’t want to hear this but if you continue to do these things, then you’re disabling those that need help the most by denying, closing or phasing out the very programs that enable them to live life to the best of their ability.

NCSA’s Amy Lutz in discussion with ASA president Chris Banks.

NCSA Letter in Support of New Jersey Bill Allowing for Videocameras in Group Homes https://www.ncsautism.org//ncsa-letter-in-support-of-nj-bi

Community query: "I have not been able to find housing / residential program willing to take my severely autistic adult son who has aggression and dangerous behaviors. I am looking for examples that work for our severe population (perhaps using care approaches informed by systems like ABA or Ukeru), and that are not private pay. Please share your experiences!" (Editor's note: NCSA is hosting a webinar on this topic on October 28 https://www.ncsautism.org/2021webinars. Photo for illustration purposes only.)

https://www.latimes.com//202/mental-health-system-failure

"We should have been able to do much better over nearly 70 years. Unfortunately, there is a continuing lack of urgency to figure out the causes [of autism] and find treatments." By Alexander MacInnis. https://www.psychologytoday.com//what-covid-19-can-teach-u

https://www.spectrumnews.org//qa-with-eric-hollander-cann/

The NCSA June newsletter is out, just click here: https://mailchi.mp/ncsautism/june2021newsletter. Webinars, news and commentary. Be sure to register for our June 24 webinar on behavioral and sensory support for severe and challenging behaviors: https://www.ncsautism.org/severe-behaviors-behavioral-suppo

45 year-old woman with severe autism raped at residential facility in Southern California. https://losangeles.cbslocal.com//anaheim-caretaker-raul-/

A Canadian autism researcher writes that "A radical change in our autism research strategy is needed." "In clinical settings, the diagnosis of autism is now too vague to specify the type of support required by the concerned individuals. In research, [this] results in a population whose heterogeneity runs contrary to the advancement of scientific progress." https://pubmed.ncbi.nlm.nih.gov/34077611/

A new ideological crusade, cloaked in pseudo-science, denigrates autism moms, writes Amy Lutz.

The no-BS single dad to a boy with autism continues to battle nonsense in the Twitterverse with nuggets of personal wisdom. Enjoy some samples here, and follow him on Twitter @jayhood73

"Each man has a severe form of autism that makes them prone to sometimes violent outbursts and destructive behavior."... "'This group home should be used as a shining success, instead ... they’re turning it into a complete nightmare for these families.'"

Did Santa give any special gifts to your kids/adults this holiday?Did Santa give any special gifts to your kids/adults this holiday?

https://www.wsj.com//covid-is-deadlier-for-people-with-aut