Autistic Adults

[Jiro]

I saw this article in my TIME magazine so I thought I'd share for those who have autistic friends or family members....

Growing Old with Autism

Noah, my younger brother, does not talk. Nor can he dress himself, prepare a meal for himself or wipe himself. He is a 42-year-old man, balding, gaunt, angry and, literally, crazy. And having spent 15 years at the Fairview Developmental Center in Costa Mesa, Calif., a state facility, Noah has picked up the con's trick of lashing out before anyone could take a shot at him.

Noah's autism has been marked by "three identified high priority maladaptive behaviors that interfere with his adaptive programming. These include banging his head against solid surfaces, pinching himself and grabbing others," according to his 2004 California Department of Developmental Services individual program plan (IPP). Remarkably, that clinical language actually portrays Noah more favorably than the impression one would get from a face-to-face meeting. (See six tips for traveling with an autistic child.)

Despite the successful marketing of the affliction by activists and interest groups, autism is not a childhood condition. It is nondegenerative and nonterminal: the boys and girls grow up. For all the interventions and therapies and the restrictive diets and innovative treatments, the majority of very low-functioning autistics like Noah will require intensive support throughout their lives. If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today's children is autistic. That means we are in for a vast number of adult autistics — most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society.

We are largely unprepared to deal with this crisis. Autism funding and research, so far, have predominantly focused on children. When I have visited autism conferences, there have been exceedingly few research projects devoted to low-functioning adult autistics. It remains difficult for families of adult autistics to find the programs they need, to access those services that are available and even to locate medical professionals and dentists who can handle adult autistics. Too much of the burden rests on the families themselves, who remain in the picture as caregivers, advocates and, too often, the only party with the autistic adult's best interests in mind.

Parents, of course, love their children. When I used to accompany my parents to visit Noah at Fairview, we would sometimes see other parents visiting their middle-aged "boys" — some of them strapped into helmets because of their self-injurious behavior — who walked with the same stiff-legged gait, bobbed their heads from side to side, twiddled rubber bands or twigs in their hands and sometimes smacked their foreheads with their fists. They were unlovely men, I thought, lost, impossible to like. But once the parents were gone, who was supposed to keep making these visits and these phone calls checking up on their sons and attending these meetings with the administrators and bureaucrats and caregivers to advocate on behalf of the lost men? That will end up being me, or people like me, the siblings. We will be the ones left caring.

My family served for the first 14 years of Noah's life as a sort of monument to my parents' love for their autistic son. We functioned as a Noah-support group. Almost as soon as I was aware of myself, there was Noah, a perpetual source of worry and concern because of his delayed development. He wasn't turning over, crawling, walking, doing anything on schedule except talking — and he soon regressed out of speech. My parents began then the lacerating pilgrimage from specialist to specialist, seeking, first, an explanation for this delayed development and then, finally, desperately, a cure, a therapy, hope.

In the late 1960s and early '70s, autism was considered a rarity in the U.S., so uncommon that many pediatricians believed they had never seen a case. Treatment was laughable: the dangerous Freudian inanities of Bruno Bettelheim and his now widely discredited methods, the talk therapy of the psychoanalytic community, whose members wanted to treat the parents rather than the child (the blame-the-parents approach). We moved from New York to Los Angeles in search of a cure for Noah. There, at UCLA, new behavioral programs, the operant-conditioning and discrete-trial therapies that now dominate autism treatment, were being pioneered by psychologists like O. Ivar Lovaas.

Noah was an early patient of Lovaas', yet the success that Lovaas would have with some of the autistic children he worked with eluded Noah, who remained among the lowest-functioning cohort — nonverbal, unable to dress himself, not toilet-trained until he was 5. Lovaas soon told my parents that he had gone as far as he could with Noah, that he was now focusing on younger children. (I have since heard of numerous children who also, as one parent I know put it, "flunked" Lovaas.) It was an early disappointment but only a precursor of so many to follow.

In the late '70s, my mother, frustrated at the lack of care and attention given to special-education children, who actually had fewer school hours and more days off than "normal" children did, opened her own day-care center for the developmentally disabled. By this time, Noah was 14 and as tall as my mother. My father, already in his 50s, was soon diagnosed with a heart problem; he has since had open-heart surgery. My mother, who had been Noah's most assiduous and faithful teacher, spending hours a day at a table in his room, constantly trying to get him to repeat sounds or tie a string, was exhausted. Both of them felt they couldn't take care of him at home anymore, that it had become a matter of their survival or Noah's. My parents reluctantly began looking for a place for Noah; a year later, they chose a group home in the San Fernando Valley. (See six tips for traveling with an autistic child.)

When we arrived, we were shown the room — four beds, three along one wall and the other in a corner, two windows with vinyl draperies — that Noah would share with three other boys. My parents signed some paperwork and showed the staff how to use the rice cooker they were donating so that Noah could still eat his favorite food. My mother had sewn labels into all his clothes and prepared a huge stack of gyoza dumplings for him. My parents were given additional forms to sign, including one that allowed the use of "aversives" — hits, slaps, spankings.

It wasn't forever, my father believed, as if he had packed his son off to a military academy for some discipline. But he knew, he already knew, that this felt wrong.

My mother was crying.

Noah bounced on a leather sofa, uninterested, and then reclined on his elbow. He didn't know this was forever; he didn't even know he wasn't coming home with us.

We left him sitting there. He waved to us, a weak, indifferent, limp-wristed gesture. Goodbye, like he didn't care.

Driving away felt like a crime.

That was the first of half a dozen residential placements for Noah. Some were better than others, but none of them was a place you would want to put your own child.

Fairview developmental center was Noah's last institutional stop. Built during the 1950s, Fairview is a complex of stucco bungalows spread over 100 acres (40 hectares) next to a golf course. Noah lived in Residence 14, one bungalow among about 50. In recent years, as the state has embraced a program known as Community Care, with the goal of moving developmentally disabled adults, including the severely autistic like Noah, from state facilities to local supported-living homes, these bungalows have been gradually shuttered. The money spent maintaining vast complexes like Fairview, the state believes, should instead be filtered through local agencies. Many of the higher-functioning developmentally disabled or autistic adults were never put into the state system to begin with, leaving the more difficult cases like Noah in facilities that increasingly rely on pharmaceuticals to treat any and all developmental and behavioral challenges.

Over the years, we noticed that each time we visited, Noah had a new scar, a black eye or a chipped tooth. In clinical parlance, these were Noah's "unobserved, self-inflicted injuries" — or USIs. One day, Noah had a dozen thick, black stitches on his forehead. As Noah's medications increased, so too did the number of USIs he suffered. Noah was already on Trileptal, Zyprexa and oral and injected Ativan. The collective side effects of these three drugs filled three pages of his IPP. I've looked and never been able to find a study of how they interact in "normal" individuals or the autistic. Because Noah had reached the maximum legal dosage for each of these medications, the Fairview staff urged another new medication, the antidepressant Remeron. (It is important to note that Noah suffers from no other physical illness, ailment or handicap. His problems are entirely neurological.)

But the drugs always seemed to make Noah worse, we pointed out.

They told us the choice was ours: either more drugs or a transfer to another ward in the facility where the most dangerous and criminally inclined autistic adults were housed.

My parents and I were desperate to find a well-run supported-living situation for Noah, but they're rare. When the state launched Community Care, numerous for-profit companies sprang up to house the developmentally disabled, each of whom is entitled to many thousands of dollars a year in state funding. The companies that have succeeded tend to work with higher-functioning autistic or developmentally disabled adults, those who pose little risk to themselves or others. Other companies are alleged to be providing inadequate care or even in some cases abusing clients. (See six tips for traveling with an autistic child.)

The risks of Community Care for families of the adult autistic or mentally challenged are numerous. Perhaps the greatest worry is that the state will cut the promised funding per client, leaving families to foot the bill. Institutions like Fairview, flawed though they sometimes are, are often necessary for care of the lowest-functioning or violently autistic. The seemingly benign term community care, when it is invoked by conservative state representatives in domed capitols, is too often a code word for budget-cutting. The concept of moving the autistic into loving group homes where they will be taught or looked after is Edenic but inadequate to society's needs. For the high-functioning, such assisted-living situations are a better alternative than institutionalization; for the low-functioning, the concept is often better than the reality. What happens if the supported-living home we find for Noah goes belly-up or loses its license or is just plain corrupt? Then where would Noah go? My parents simply can't care for him at home, nor could I.

And yet by 2005, my brother seemed almost in critical condition; we had no choice but to find yet another new place for Noah.

When I was writing my book about my brother, Boy Alone, I wished I had a story of hope and salvation. It is miracles that sell books. There seems to be an insatiable demand for narratives that end in triumph over an affliction: the cripple walks, the mute speaks, the autistic boy laughs and hugs and cries. We hunger for that uplifting journey, as opposed to the cruel odyssey I had to tell. What did I have to offer? My adult brother, still autistic, still nonverbal, still lost. As much as I hope that all the autistic boys and girls will get better, and as much as I can encourage their families to fight with all the hope they have, I also know that they will not all recover. The boy or girl will grow up, and there won't be a miracle; instead there will be an effort, something like what my family goes through every day, to figure out what to do.

We did, however, catch our own small break three years ago. Through the Westside Regional Center, my parents found out about Diverse Journeys, an assisted-living program willing to place Noah in a rented house in Los Angeles closer to my parents' home and therefore an easier commute for their weekly visits. Noah lives in a two-bedroom house with a roommate, a "normal" person, whose rent is partly subsidized in exchange for the attention she must pay to Noah when she is home. A rotating series of caregivers take Noah to the park or for walks or to fast-food restaurants during the day.

The program has made some real progress in weaning Noah from some of the medications he had been taking, cutting him down to two drugs from four. And the mysterious scars and bumps and bruises he was getting, what Fairview termed USIs, have largely ended. So far, Noah's assisted-living program represents a great improvement over Fairview, and my parents and I are thankful every day for this change in Noah's circumstances.

When Noah is happy, it is a stark, uncut ebullience, rising, as my father wrote in his first book about our family, A Child Called Noah, "from a deep, pure place." The joy emanates from him with such force that he will run toward me with his wide smile and rub his head against my shoulder in an almost feline gesture of pleasure. On days when Noah is in a good mood, when he is humming an up-tempo version of his melody of repeated, nonsensical syllables, we are again reminded that he is capable of great happiness.

Yet on some visits he is awful. He has good moods and bad moods. Just like me.

Is Noah happier in his new situation? Perhaps a little. He can never say.

Noah's condition persists, an immovable psychic object. As a family, we lived in the present, from crisis to crisis; my parents always mustering the energy for a response. My father is in his 80s now, my mother in her late 70s. They will go on as long as they can. Then I will try to step in.

Will I always be there for Noah, as my parents have been?

I wish I could say, Yes, definitely, I will be there.

But I honestly don't know.

Greenfeld is the author of Boy Alone: A Brother's Memoir (Harper), from which this article is adapted

 

[Jiro]

and also the sub-article along with it - Six Tips for Traveling with an Autistic Child

 

[Mrs Bucket]

It is much harder for society to accept adult autism because society feels it is easier to accept childhood autism.

People forget autism doesn't go away. The autistic tendencies may wean away but autism itself will not "go away" like an annoying pest.

Coping methods will need to be taught.

Can you imagine 100 senses going on all at once in an autistic person's body and to be told "to behave and sit down" like a good boy/girl when they aren't being given coping methods like ticking, playing with ribbons or humming to themselves as a reprieve.

A good friend of mine posted a note in her FB about dealing with her son's autism. She's trying very hard as a single mother to raise her two sons, her "so called" friends are starting to abandon her because they fear for their own children's safety.

It's very sad to see this because in the very end, the autistic children/adults have done nothing wrong to ask for this kind of treatment.

A special letter about Autism

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help make our visit to be more successful.


As you probably know, I am challenged by a hidden disability called Autism or what some people refer to as a pervasive developmental disorder (PDD) Autism / PDD is a neurodevelopmental disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see but which make it difficult for me to adapt to my surroundings. Sometimes I may seem rude and abrupt, but it is only because i have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes at math (Albert Einstein was thought to be autistic), or have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn't understand how the inhabitants communicated. This is why I need to have things done the same as much as possible. Once I learn how things happen, I can get by ok. But if something, anything changes, then I have to relearn the situation all over again! it is very hard.

When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you - I am not. Rather, I am hearing everything and not knowing what is important to respond to. Holidays are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for some people, but for me, it's very hard work and can be extremely stressful.

I often have to get away from all of the commotion to calm down. It would be great if you had a private place set up to where I could retreat. If I cannot sit at the table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is impossible for me. I feel so uneasy and overwhelmed by the sounds, smells and people - I just have to get up and move about. Please don't hold up your meal for me - go on without me and my parents will handle the situation the best way they know how. Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all of the senses involved with eating: sight, smell, taste, touch AND all have complicated mechanics involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky - I literally cannot eat certain foods, as my sensory system and or oral motor coordination are impaired.

Don't be disappointed if mommy hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. A very smart adult with autism, has taught people that when she has to wear stiff petticoats as a child, she felt like her skin was being rubbed with sand paper. I often feel the same way dressed in dressy clothes.

When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard to figure out!) things have to be done in a way I am familiar with or else I might get frustrated. It doesn't mean that you have to change the way you are doing things - just please be patient with me and understanding of how I have to cope - mom and dad have no control over how autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "self regulation" or "stimming". I might rock, hum, flick my fingers at my face, flap my arms or any number of things. I am not trying to be disruptive or weird. Again I am doing what I have to do to for my brain to adapt to your world.

Sometimes I cannot stop myself from talking, singing, or partaking in an activity. the grown ups call this "preservating" which is kind of like self regulation or stimming I do this only because I found something to occupy myself that makes me feel comfortable, and I don't want to come out of that comfortable place and join your hard-to-figure-out-world. Preservative behaviours are good to a certain degree because they help me calm down. Please be respectful to my mom and dad if they let me"stim" for a while, as they know me best and what helps to calm me.

Remember that my mom and dad have to watch me much more closely than the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you tippies (what we autistic folk often call you neurotypical folks!) It hurts my parents feelings to be criticized for being over protective or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.

Holidays are filled with sights, sounds and smells. the average household is turned into a busy, frantic, festive place. Remember this might be fun for you "tippies", but it's very hard work for me to conform. If i fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow "tippy" rules.


I am a unique person - an interesting person. I will find a place at your celebration that is comfortable for us all, as long as you view the world through my eyes!