May is Mental Health Month

May 11, 2021April 17, 2021 / Susan O. / Leave a comment

One in every five people in the US carry some sort of “mental Illness” diagnosis – 20% – making it almost twice as common as killer heart disease, yet people hear the term “mental illness” and pictures of unshaven, alcohol-soaked homeless men and babbling old women with uncombed hair and too many cats come to mind (Don’t judge me!).

In reality, that’s far from the common truth. The umbrella term of “mental illness” includes everyone from your depressed cousin, your churning anxiety over political situations, and Uncle Louie, who served in Iraq and spends most days with his friend Jack Daniels. It includes the teen with autism who works down at the laundromat (don’t jump on me; a strong majority of autism includes OCD and anxiety, with phobias topping the list at 30%), the hoarder you drive past on your way to work, that girl on the cheerleading team who wears a baggy size 0, and that guy at work who stays four hours later than anyone else and talks so fast you can’t follow him. It includes celebrities, like Robin Williams, Margot Kidder, Robert Downey Jr, Brittney Spears, Carrie Fisher, Brooke Shields, and so many more.

“Mental Illness” is more common than COVID.

While some introverts have fared well through the pandemic and quarantines, many people have not. Rates of depression in adults went from 8% pre-pandemic to 28% – almost one in three – after. For those who lived alone, the rates approach 40%. Isolation, job loss, poverty, loss of loved ones, anxiety, and long-haul COVID symptoms all play their part in feeling crushed by a microbe. Among children, who can’t always understand the details of what’s going on, rates of depression and anxiety straddled 40%.

Unfortunately, our image of “mental illness” is tainted by historic images of schizophrenia, the king of all mental illnesses, and often the most resistant to treatment. We watch movies such as One Flew Over the Cuckoo’s Nest and I Never Promised You a Rose Garden, while not remembering that these movies depict mental illness treatment from as much as 70 years ago, when diagnoses were vague, medications were ineffective and dangerous, people believed in insulin comas and the disaster of lobotomies, and there were no PET or MRI scans to show exactly what the problem was. There was a time not very long ago when the number one treatment for syphilis was mercury. Times have changed, and chances are there’s actual help for that now.

How can something affecting 30% of the population be abnormal? Here’s a fact: it’s not, but our refusal to admit it keeps people feeling ashamed and afraid to seek treatment. If you feel down, if the social distancing and anxieties are getting to you, if your child is fearful and withdrawn and having trouble sleeping, reach out! Help is just a phone call away. No insurance? No worries. There are places to help you get medical coverage, and places that work on a sliding scale. There IS help, for everyone. Don’t be afraid to ask.

If you feel like life is overwhelming you, if you are worried about a loved one, if you are struggling with just getting through your day, CALL the CT ACTION line (Adult Crisis Telephone Intervention and Options Network). It’s available 24 hours a day, because the worst thoughts usually happen during the night. 1-800-467-3135, or just call 211, which is the general help line for state services.

Don’t want to feel like you’re the only one on the planet feeling down? Check out these popular books and films on people having difficulties. Chances are, yours aren’t that bad.

Embracing Earth Day

April 22, 2018April 4, 2018 / Susan O. / Leave a comment

In January 1969, off the shores of Santa Barbara, California, on oil rig received a waiver to use a protective casing 61 feet shorter than Federal regulation allowed. The rig exploded with such force the sea floor cracked in 5 places. Three million gallons of crude left a 35-mile oil slick on California’s shores, and television brought images of ruined beaches and dying, oil-soaked animals into every home.

It was the flashpoint of the modern environmental movement.

So horrified were people that politicians banded together to pass the Environmental Protection Act (1970), the Clean Air and Water Act (1972), and the Endangered Species Act (1973) as they realized the impact pollution was having on the country. And spearheading that, as a result of that oil spill, Earth Day was born on April 22, 1970, to raise awareness and bring people together to discuss environmental issues.

The Troubling Truth

Earth in 1970 was a very sorry place. We knew we were in trouble since Rachel Carson’s Silent Spring brought toxic issues to the forefront in 1962, but we did little. Air pollution killed scores of people through respiratory disease (a 1952 smog inversion killed 12,000 people in London. A 1966 attack in New York City killed 168 people in just 3 days. Smog.) Factories, farms, and mines dumped waste everywhere. Love Canal was killing children with 30-year old toxic waste. The Bald Eagle, symbol of our country, was hovering at less than 500 nesting pairs remaining, and (by 1987) the California Condor would drop to 27 remaining individuals, due to DDT (which made eggs fragile) and lead poisoning. The dropping rates of biodiversity were becoming obvious.

Environmental Victories

And with all the discussion and science, changes began to happen. DDT was banned in 1972. Leaded gasoline was phased out in 1973. Lead-based household paint was banned in 1978. Flame retardants were phased out of infant clothing (because babies have such capacity to spontaneously combust after sunset). Pesticides were examined, and many were quickly banned from use. And amazingly, the Earth began to recover. Today the Bald Eagle is off the endangered species list, with more than 5,000 nesting pairs noted – I almost drove off the highway when I saw one sitting on a light post in the Catskills. A living, wild, Bald Eagle. A few California Condors have been re-released into the wild, with more than 400 individuals now living wild or in captivity. New trucks and buses have 99% fewer emissions than those in 1970. The Hudson River now has fish again.

A Long Way Still to Go

While Earth Day and a commitment to protecting our environment – and thus ourselves – has spread around the world, the world remains a very, very polluted place. Toxins from the 70’s still lurk in the oceans. Oil spills remain in beach sand and marshes. The US boasts more than 1300 Superfund sites for government clean-up – 26 in Connecticut, and a former one here in Cheshire. Around the world, developing countries lack regulations and power to deal with toxic waste – China’s air quality is deadly due to coal-fired factories belching out pollution. Africa is poisoned by heavy metal mining. India suffers from toxic manufacturing chemicals. Lake Karachay in Russia is the most polluted place on Earth: an old dumping ground for nuclear waste, standing on the shores of the lake will kill a human in no more than an hour – far more deadly than the radioactive Chernobyl or Fukushima disasters, which will haunt us for thousands of years to come. Microbeads are choking animal life. Pesticides believed to be linked to some forms of autism still hide in lakes, and toys, furniture, and clothing manufactured in Asia can still contain lead and chemicals long-banned elsewhere.

The Importance of Individuals

While we may blow off our green recycling bins and never return our bottles, those little things, combined, make a big impact. Recycling aluminum cans saves 95% of the energy needed to produce new ones from ore. One ton of recycled paper saves 17 trees, lessening the greenhouse effect. One ton of recycled plastic saves 16 barrels of oil – $1,000 per ton. Multiply that by all the people in your town, your state, your region – and think how that snowballs. So celebrate your cleaner environment on April 22. Plant a tree. Pick up garbage on the side of the road. Recycle your bottles. Take a walk and look at all the diversity of trees and flowers and birds around you, and breathe deep of air that doesn’t burn your nose and eyes and make you cough (does anyone else remember the stink of the Uniroyal plant when the wind would shift in 1970’s summers?) Marvel at the sight of fish in the Naugatuck River, where nothing survived before. A clean planet is in our grasp. Give a hoot, don’t pollute, and save paper by checking these books out from the library!

Son Risen – Books about Children With Autism

August 26, 2015August 22, 2015 / Susan O. / Leave a comment

Barry Neil Kaufman’s son Raun was born in 1973, only to be diagnosed with severe autism by the age of one and a half. Refusing to believe the prognosis, the Kaufmans spent hours observing their son, and created their own special program for him long before anyone beyond Lovaas and Bettleheim were making any attempt to teach autistics. Three years later, their son showed no symptoms of autism, not even Aspergers. They named their program the Son-Rise Program, now taught at their foundation, the Autism Treatment Center of America in Sheffield, Mass. You can read their incredible story in Kaufman’s book Son-Rise, or the newer version, Son-Rise: The Miracle Continues, which includes the development of their foundation and follows Raun when he’s older. I warn you, however, the newer version gets a little heavy in the New-Agey/Hippie feel.

To prove that you didn’t need to start with an infant to get results, Kaufman also wrote up his work with a five-year old boy named Robertito, in the book A Miracle to Believe In. Again, Kaufman’s methods produced a child who came back from the depths of Autism to be a happy, intelligent, socially-adjusted verbal child.

Now Raun Kaufman himself, the director of Global Outreach for the ATCA, has written Autism Breakthrough, a book that details the process the Son-Rise program uses, so you can try it yourself. The basis for the program goes against modern practices – and Kaufman’s explanations make very good sense. In short, autism is a disorder of social-relational behavior; if you can’t fix that, then all the educational training in the world isn’t going to help. The program focuses intensively on connecting with the child by entering their world, and then drawing them out into yours. Once you have social interaction and communication, then education can fall into place easily and logically.

While I am a Kaufman guru – I’ve used many of their methods with a number of “throwaway” kids and made connections like no one else – there are places we’ll have to agree to disagree. Diet is one of them. If your child’s autism is cured by diet, then chances are it wasn’t autism to start with. While organic diets are wholesome and ideal for everyone, I do not recommend “assuming” your child has a difficulty with a food just because someone said so. I do not recommend filling your child with probiotics or supplements unless a doctor has proven there is a serious deficiency. Too much of the wrong thing can be just as bad as a lack of something, and certain vitamins can be toxic in large doses. He doesn’t mention honest-to-goodness physical issues, such as brain disorders, genetic issues (such as Rett’s or Fragile X, often lumped with autism), or seizure disorders. While he does mention that you should not allow your child to do anything unsafe, he makes no attempt to give guidance to parents whose children are severely hyperactive, sleepless, or self-injurious. It’s wonderful, it works, but he glosses over the amount of time it takes to make the program work and have even the most minimal semblance of a life. His own “cure” took a team of people working almost around the clock for more than three years. Most people can’t do that.

On the opposite side of the spectrum (no pun intended), hunt down A Child Called Noah, by Josh Greenfeld. Greenfeld’s son Noah was born in 1966, just a few years before Raun Kaufman. Noah was also born severely autistic, and his story is much more typical. His father, a screenwriter, documented their family struggles through three volumes, and the other year his brother, Karl Greenfeld, wrote Boy Alone: A Brother’s Memoir, on what it’s like to live in the shadow of an autistic sibling. What he chronicles is much more typical of a family with extreme autism. If your child is not or will not be a miracle, the Greenfelds will let you know you are not alone.

Soak yourself in the Kaufman’s program (he does have a chapter just for dealing with Aspergers). Of all the programs out there, this is one I can stand behind, but like everything else, take it with a grain of salt. Critics complain it is not possible to scientifically measure the program, therefore no aspect of it can be considered valid, others complain it is still a gentle teaching/ABA program under a different name; other parents have not seen such miracle results. Nothing is perfect, nothing works all of the time. But in the land of Autism, even a thirty-percent increase in functional ability is a landmark indeed.

Halloween with the Autistic Child

October 28, 2014October 20, 2014 / Susan O. / Leave a comment

Halloween is coming fast! Holidays are often confusing times for the autistic child. They want to participate like everyone else, but too much change in routine or clothing can create problems. While older, less-impaired children can have input into what they like or don’t like, what do you do with the young or more severely-impaired child? As the parent of a profoundly impaired son with autism, here are some of my holiday-saving tips:

1) It’s okay to say to no. Autism is fickle second to second. Halloween was a snap last year, this year everything is a meltdown. It’s okay to skip this year. Next year may be a winner again. If all else fails, have the child stay home and pass out the candy.
2) Keep costumes simple. No masks. Little to no face paint. Nothing that feels unnatural. Nothing out of the ordinary like giant wings or high heeled shoes. No gloves to decrease already shaky sensory input. No strings or fringe to obsess on. No beads that can be picked off and eaten. Make sure sleeves are close-fitting. Flapping is an issue with some children: don’t risk accidents in this season of open candles.
3) Allow the child the right to say no. If there’s a decoration at a house that scares them, allow them to skip that house.
4) Keep it short. Participating doesn’t mean you have to hit every house in a two-mile radius. The year of the October Blizzard, when no one had power for Halloween and the festivities were “canceled”, it was impossible to explain the situation to my younger foster son. We dressed him up anyway, stopped at both grandparent homes and a neighbor who was in on it, and he got to “trick or treat” on that all-important correct day. Three houses was enough. Meltdown avoided.

So what do you do, then? How can you have a costume without all the cool trappings? Keep it simple, keep it real. J. has a baseball jersey. Paired with a ball cap and a pair of matching sweatpants, he’s gone as a baseball player several times. The clothes are normal to him. Firemen. Policemen. A barbecue chef in an apron. A nurse or doctor in scrubs. Any community job you can show the child in a book and they can relate to. Dancers, the lady who cuts hair, the bus driver, a mommy with a doll and a stroller or shopping cart. Bob the Builder, with a pair of jeans, a plaid shirt, a tool belt, and a yellow hard hat. Very simple, very easy.

If you want to get fancier, create something easy that goes over their clothes. We have an orange fleece poncho with a pumpkin face made out of felt and glued on the front. A couple of felt leaves and a brown stem sewn to a green hat, and we had a pumpkin costume. Because it’s a fleece poncho, it’s not only warm, but fit for several years. A cat costume out of black clothing, a pinned-on tail, and felt ears either glued to a headband or a hat. A hobo clown, with mismatched plaid shirt, baggy jacket, and ragged pants with a rope belt and touch of red makeup to the nose was another year. Many times kids like capes, so an all-black-clothing Batman with a cape and a hood, or a vampire in white shirt, black pants and cape, and a red ribbon “Medal” made of tinfoil are often well-tolerated. One year we found a Hoodie with skeleton bones on it, added chalk “bones” on a pair of black sweatpants and we’d found our every-day-clothes costume.

Halloween doesn’t have to be a meltdown. Keep it simple, keep it calm, both for your child and yourself. Explain the day as you go: We will stop at ten houses and ask for candy, then we will go home. Try extra-hard to stop only at the homes of people your child knows; for a child with no awareness of stranger-danger, you want to reinforce who is safe and who is not. If all else fails, stay home, play some Halloween music, watch Charlie Brown, and try again next year. It will get better.

Susan reads: The Autistic Brain by Temple Grandin

June 16, 2013June 12, 2013 / Susan O. / Leave a comment

I avoid books on autism. I don’t like the terminology of the “autism spectrum” and the snake oil cures that celebrities like to flaunt. I have worked with the seriously autistic for more than 25 years – the hard-core institutionalized kind – and have little tolerance for someone who thinks their child is autistic simply because he’s an introvert. And for the last 30 years I’ve had a profoundly impaired autistic foster son, and all that happy information for the mainstreamed four year old who might have Asperger’s does not apply to hard autism. Thus, I have avoided reading anything by Temple Grandin, the Holy Saint of autism.

My bad.

In The Autistic Brain, Grandin discusses very rationally the numerous scientific studies done on communicative autistics, how they often have an inner thinking self and an outer acting self, and how the two don’t often interact. The current psychiatric labels, she feels, do autistics a huge disservice by lumping so many people under one umbrella no one can tell who is who – and leads to misdiagnoses and disproportionate numbers. She discusses how functional MRI imaging shows the different ways different autistics perceive the world, and that one type of treatment will not work for all, and that it’s the brain that’s the issue, not the psychoanalysis. That reiterated some serious studies I had read years ago. She talks about the part genetics plays, and how research has shown some links, but no answers at all. Grandin stresses that education for autistics – whether the high-functioning Aspie who will find success in Silicon Valley or the non-verbal autistic who cannot dress himself independently – needs to focus on what strengths the person has, not what deficits, and that deficits can be improved by using strengths, and that these children, no matter what the functioning level, need to get out into society and learn even rudimentary social skills, for that is the only way they will ever progress.

Grandin’s discussion of picture-thinkers, pattern-thinkers, and word-fact thinkers set my mind reeling to the hundred or so autistic children I have worked with, and the lightbulbs went on over my head. I thought about things I have tried, things that have worked, and things that have failed in a whole new light, and cannot wait to try new trajectories w/ my son. Grandin made me feel good that we have defied the “experts,” taking my son – whom no group home would touch because his behaviors were so severe – to places like Manhattan, Baltimore, Boston, boats, trains, weddings, and more – with a 90% success rate. She made me understand how J. can do things no “autistic” is supposed to be able to do. I cannot recommend this book enough to anyone dealing with an autistic person of any functioning level. Thank you, Temple, for understanding. You’ve taught this old dog some new tricks without all that quick-cure quackery, and made a believer out of me.

If you’re dealing with an autistic child, I also highly recommend Barry Neil Kaufman’s book Son-Rise, about his own autistic child. If you can, read the original version. His later version (The Miracle Continues) delves too deeply into his new-age self-help foundation while the original deals only with his son.