The Forgotten Ones: Adults on the Spectrum
Most of the media attention on autism focuses on children. But 50,000 children with ASD turn eighteen every year in the United States alone, and less than 20 percent will live independently.1 Adults with autism have symptoms that range from those who may have intellectual impairment and no spoken language, with a need for extensive support and services, to those who live independently, and everything in between.
Can we talk? Autistic adults are some of the coolest people I know, but the current prognosis for adulthood on the autism spectrum is not so sparkly. An article in the journal Pediatrics states that children with ASD become adults who, “regardless of their intellectual functioning, continue to experience problems with independent living, employment, social relationships, and mental health.”2 The vast majority remain dependent on their families for support, and there never seem to be enough services after they turn eighteen.
The article further states, “Optimization of healthcare is likely to have a positive effect on habilitative progress, functional outcome, and quality of life.”3 If restoring and maintaining vibrant health increases the level of function, it makes sense that it also increases the odds of independence as an adult. I passionately believe that if the unique health challenges of ASD were better understood and addressed, many more adults would be able to live more independently.
Adults on the spectrum live in a variety of settings4:
With their parents or other family members
A group home or other assisted living facility
A multifamily home, apartment, or townhouse with a roommate
Their own single-family home, apartment, or townhouse
A planned community
A regular community
An institution
Assessing and addressing the unique health challenges of ASD will vary depending on the setting.
Children with Autism Grow Up to Be Adults with Autism
Chronic health problems only magnify and deepen when ignored. If the health challenges and medical difficulties of ASD have not been appropriately addressed in youth, these children can grow up to have chronic health problems as adults, with difficult behaviors to match the pain and discomfort they are in. This puts them at risk for being medicated for those behaviors. The more challenging the behaviors, the more medications they are on.5 Medications to control behavior become a big part of “treatment,” which we now know may simply be due in part to unaddressed health problems. Armed with the knowledge of ongoing research, and the protocols in this book, you can give your son or daughter a best shot at living independently, and it starts with appropriate health assessment and care.
GI pain isn’t responsible for all behaviors, but it is the first thing to consider and rule out before reaching for the heavy-duty antipsychotics to calm them down.
In my personal experience at the clinic, it is sometimes more difficult to begin these health protocols as adults for several reasons:
Adults can make their own decisions, and you can’t make them take anything. Unless you have guardianship, doctors can’t even share what is discussed during an office visit without your adult son or daughter’s permission.
They may be opposed to taking any type of medication or supplement, even natural ones.
Many struggle with ADHD, disorganization, and a lack of internal structure. I have some adult patients who try these protocols and want to do them, but cannot remember to consistently take the pills on their own.
Fifty-four percent of adults with autism say they need moderate to complete support just seeking help from a healthcare professional.6
Seventy-nine percent of caregivers for an adult with autism ranked seeking healthcare as the number-one daily activity requiring support.7
Children and adults with ASD use more healthcare services than their neurotypical peers, so it is vital to go after good health proactively, rather than reactively.
The vast majority of adults with autism live in a family setting or with roommates. Those of you whose adult son or daughter still lives in your home or in a home nearby will have an easier time helping them strive for health and independence because you will be there to keep things on schedule if need be. You will have the full toolbox to choose from and can make adjustments to the health plan on the fly. It will be easier to try new things and note the results for those in a family setting. The elephant in the room, and our biggest fear, is that we won’t always be there for them. Teach your child to be involved, if possible, in his health protocols, so that he has his best chance at managing them himself in adulthood.
The same generally goes for adults living in privately owned assisted living facilities—if you and your adult son or daughter wish to take enzymes or probiotics, no one is going to fight you on it.
What about those of you who have a minor or adult child whose care is managed by an agency or organization? Is it possible for those in such an assisted living situation to use the protocols I’ve shared in this book? The answer is sometimes, depending on the policies of the organization.
The good news is that it’s never too late to start, and adults, no matter what their age, will respond to appropriate treatment.
Jo-Jo’s Story
Jo-Jo was thirty-five when I met him and had been in a residential living setting for more than ten years. The director of Jo-Jo’s facility made the appointment at my clinic, saying, “We’re out of ideas on how to handle him.” He had become increasingly violent and unpredictable and was starting to injure his staff, and no one wanted to work with him.
For our own safety and that of our patients we were advised to “close” the office for Jo-Jo’s first visit. We were told to pull back our hair and wear no jewelry. Even though he arrived accompanied by three strong companions who used a harness to control him, Jo-Jo wreaked havoc in the office that day.
He presented with an alphabet soup of diagnoses. In addition to autistic disorder, his chart claimed he suffered from intermittent explosive disorder, mood disorder/bipolar disorder, moderate “mental retardation,” seizure disorder, chronic sinusitis, chronic urinary tract infections, cystitis, severe gastritis, history of pancreatitis, and gastroesophageal reflux disease (GERD).
He looked ghastly. He did not have any teeth, his skin was a shockingly pale white, and he had deep, deep dark circles under his eyes. His nose ran constantly during the two-hour visit. He had no self-control; he ran and jumped around the office, grabbing anything and anyone who caught his attention.
The medical history from his first two years of life indicated recurrent diarrhea, foul-smelling bowel movements one to three times a day, frequent gas, rashes, runny nose, and strep throat. (Are you already thinking what I’m thinking—that his GI tract needed support and balance?) Things didn’t get any better as I reviewed his childhood: He spoke only one or two words, exhibited a high tolerance for pain, had frequent colds and strep, sinus infections, urinary tract infections, bright red cheeks and ears, cracking peeling hands and feet, poor sleep patterns, aggression, and a habit of sideways glancing.
At age 35, he had a vocabulary for three things: “Dinki-dink” for any type of drink; “Nu-Nu” for any type of food or a snack; and the word “Hurt.” His adult medical record revealed chronic severe constipation, very foul-smelling bowel movements and gas, frequent colds, chronic runny nose, chronic sinusitis, chronic severe gastritis, chronic urinary tract infections, cystitis, seizures two to three times a week, severe sleep disruptions, chronic medical crises, and multiple hospitalizations. He said “hurt” hundreds of times a day; staff did not know why. He was commonly observed sitting doubled over or draped over furniture, pressing on his abdomen. He was taking nineteen medications to make him poop, sleep, behave, control fungal infections and seizures, and manage allergies and acid reflux, and he made frequent trips to the doctor. Jo-Jo experienced nighttime voiding seven days a week that completely drenched his pajamas and bedsheets. The workers couldn’t wake him up to change his clothes and sheets without risking an angry beating. It was a difficult choice of either waking him and being attacked, or leaving him to sleep in wet bedding and clothes.
His behavior was recorded as “very violent.” As a result, he was not allowed to go to restaurants or to join holiday or birthday parties with the other residents. He was banned from the local park (he had once attacked a stranger there). He had injured his social companions; now most were reluctant to work with him. His caregivers reported there had been no changes in his behavior in ten years, despite their best efforts: They put him on a dairy-free diet and took him to a massage therapist, a chiropractor, and multiple medical doctors in an attempt to improve his health and quality of life.
Jo-Jo lived in a caring facility, had a carefully monitored diet, was on nineteen medications (many taken daily, some only as needed), and had a skilled medical team. What could I possibly offer this very ill, violent, unhappy man? What in our current understanding of autism could help me design an appropriate health program for him?
I started with the gut; it was a source of pain, plus it contained the bulk of his immune system, and this was a very ill man. We followed the same Basic GI Support Protocol that I use for any ASD patient who presents with constipation, night awakenings, and irritability.
With the use of digestive enzymes, probiotics, antifungals, and immune support supplements (Vitamin D3 and low-dose selenium), the improvement was dramatic. Jo-Jo responded rapidly, as if his body couldn’t wait to heal. His runny nose stopped immediately and hasn’t been seen since.
Jo-Jo’s seizures decreased significantly (from two or three a week to one a month, at most). He no longer had urinary tract infections, rarely caught a cold, had no seasonal allergies, was constipation-free, and his pallor was gone. His sleep patterns were greatly improved, his disposition calm, and his aggressive behavior had disappeared. He no longer tried to injure his companions and could walk past my tiniest patients without causing any alarm. Jo-Jo was not an inherently violent man; he was in extreme pain and unable to express it. Once out of pain, his true gentle nature was revealed. He attended three large Christmas parties in one month, without incident, and had a blast. He was allowed to visit the park again and have a sit-down meal in a restaurant with only one social companion accompanying him—something unheard of for him in the last ten years! He remains intellectually disabled but is happy and enjoys a good quality of life. His nighttime voiding in the bed decreased to about three times a week; however, his companions can now safely awaken him to change his clothing and sheets without fear of being harmed, and he can sleep through the night in dry clothing and sheets like a real human being.
Best of all, Jo-Jo could now speak in a few full sentences. Although this language achievement was quite limited, it was a huge improvement. He used to just hit people when he was hungry, thirsty, or wanted to be left alone. His social companions used to randomly hold up food or drinks throughout the day to avoid being hit. Now he could say, “I would like lunch, please,” or “Alone” when he wanted others to go away. He no longer said “hurt” hundreds of times a day (or even at all). He was happy. Perhaps most amazing, he had a sheltered job that he enjoyed.
I have presented Jo-Jo’s case to rehabilitation professionals, social workers, teachers, doctors, and medical students. When I ask, “What would you do for this patient?” I am met by blank stares.
My message here is to continue the healthcare strategies you learn in this book into your child’s adult life. Once Jo-Jo’s physical conditions had been corrected with the proper approach, he was well enough to engage in social skills exercises and speech therapy—interventions that were formerly beyond his reach because of his aggressive, violent behavior. Maintenance protocols are essential. Nothing is going to cure Jo-Jo’s ASD or cognitive impairment, but I feel he could have had a much better quality of life than he experienced, as described later in this chapter.
The “Medical Home” Model
I always focus on building a team of doctors, therapists, and specialists for my patients. In fact, I advise you to avoid any one doctor or type of therapy that claims to have all the answers for ASD.
In 1967, the American Academy of Pediatrics developed the concept of the “medical home,” a central system for medical records and a team-based approach to lifelong care that considers all of a patient’s medical needs under one umbrella.8 Ideally, care under such a model is centered on the patient and family, led by a personal physician, and coordinates and integrates care among all doctors and specialists for all the health needs of the patient.
The medical home model is ideal for all children and adults, especially those with an array of health challenges such as seen with ASD.9 When organizations that manage housing and medical care for adults in the community with ASD take charge, medical decisions are centralized and team-based. And this can be a good thing: When my adult patients whose care is managed by an agency or organization come for a visit, I have access to a comprehensive set of integrated health records and can coordinate my contribution as well. Care is detailed, structured, and comprehensive. The patient is regularly seen by his doctor, chiropractor, dentist, and other specialists, and no appointments are overlooked or forgotten.
In this type of situation, families usually cannot just say they would like their son or daughter to try these protocols or a special diet. A physician or other healthcare professional must give written orders. When I provide a health plan for a patient in a facility, I always type it out, and I always keep in mind that supplements are easiest to give at meal times in these facilities.
There is a drawback to this model: The team leader’s medical training and biases will obviously influence care decisions, and sometimes that’s not a good thing if the leader hasn’t followed all the new information and research about ASD that is available these days. Look at Trey’s story to see what I mean.
Coming Home: Trey’s Story
“Trey wants to come home, but no facility will take him.”
Trey is a fifteen-year-old with autism spectrum disorder. He has spent the last four years in a facility for juvenile offenders.
I got a call from the local Department of Health and Human Resources asking if I could come to a meeting downtown and see if there was anything I could do to help this young man, and adding, “We have tried everything and don’t know what else to do.” No medication had been left untried in the quest to control Trey’s behavior.
I arrived at the meeting and was the only person in the room without a lawyer. The juvenile facility and Trey were participating via conference call. I listened to Trey’s story and asked questions about constipation, sleep, and eating patterns. Here is a snapshot of his story:
Trey suffers from poor sleep patterns, constipation, aggression, and irritability. He is restrained four to six times a day for outbursts of anger and aggression, and he has fecal smears in his pants up to four times a day. He is being medicated to poop, sleep, and behave.
Trey is still in high school, and the facility wants him out of there. His goal is to be near family, but he is so violent that no facility here will agree to accept him. Trey is “willing to do anything” to move back home.
I explained how nationally recognized autism doctors feel GI dysfunction and discomfort can cause or exacerbate aggressive behaviors. Everyone in the room, including Trey, was excited to give the Basic GI Support Protocol a go. A trip was arranged for Trey to see me in my office.
Trey was a sweet young man and on his best behavior. I could see he would likely benefit from some basic gastrointestinal and health support strategies. I typed up a plan for digestive enzymes, probiotics and S. boulardii, among other suggestions, included copies of the pertinent research for the medical director of his facility, and off they went.
Surprisingly, the facility’s medical doctor refused to implement this simple, straightforward plan. He did not “believe” in natural supplements. A judge issued a court order to implement the plan. The facility again refused. Action was threatened, and the facility finally complied.
Two months later, the facility had recorded only four violent outbursts from Trey for an entire month instead of the usual four to six incidents per day, and he had only soiled his pants four times in the month instead of several times a day. He was sleeping better and reported feeling happier than before. Years of prescription medications could not achieve what a few weeks of probiotics and other supplements did for Trey. He is back home: He can now poop, sleep, and behave on his own, is employed, and wants to learn to drive. The rest is up to him—balanced GI health is giving him his best chance.
Why was the facility so dead set against trying something as innocuous as over-the-counter digestive enzymes and probiotics? They were willing to experiment with powerful antipsychotics and other medications with significant risks and side effects. They had admittedly tried “every kind of medicine there is.” You may run into this lack of flexibility from your son or daughter’s medical team as well.
There are some situations where you will have no say in your adult child’s care. If you do not have custody or guardianship, you cannot intervene. If your child is doing time in a correctional facility of some type (like Trey was), you will have no say in his medical care. Same goes if he is a ward of the state. The medical director of a facility can refuse your suggestions.
But if you can be involved, where should you start? First off, always be an active member of your child’s healthcare team, if possible. Be involved, ask questions, and accompany your son or daughter to appointments. Ask around or make a few calls to find a physician who will use natural protocols like the ones presented in this book, someone who is knowledgeable about the health challenges facing those on the spectrum. Look for a physician trained by the Medical Academy of Pediatric Special Needs. Ask for a group meeting with the facility and nursing staff—whoever makes the decisions. Give them the name of the physician you would like your child to see, the reasons why, and what your goals are. See if you have any sympathy for this approach. If so, then the staff can schedule an appointment with the new physician for your son or daughter. Feel free to share this book with the staff and physician.
Here is another example of an inflexible medical home—the heartbreaking surprise twist to Jo-Jo’s story:
After several years of health for Jo-Jo, we noticed he was no longer coming for follow-up visits. We called one day to check on him, only to learn there had been a change in the nursing and medical staff.
The new nurse we spoke with was sarcastic and cold. She informed us that Jo-Jo was no longer following our protocols since “none of that stuff works.” Incredulous, we asked if she was familiar with his history and how well he had done since coming to our center. She said she was very aware of his history, and again repeated that none of our advice or supplements had ever worked. She hung up.
I was dumbfounded. Natural interventions can be powerful and effective additions to the toolbox, yet the new medical staff obviously felt they were the equivalent of witchcraft. I often wonder how Jo-Jo is doing and am saddened to think that he may return to his former state of pain, ill health, and overmedication.
My Suggestions for Adults with ASD
I passionately believe that every adult with ASD deserves to be a happy, productive, integrated member of our society (see Figure 8-1). Each person has value and a place. We have to take the time to assess and support optimal health for adults with ASD, and to do that, we have to understand the health challenges they face. The conventional model of using prescription medications for individual symptoms isn’t bringing vibrant health for many of them so far. Giving them antipsychotics instead of relieving painful health conditions is not doing anything to increase their chances of success and independence (see Figure 8-2). They may still need medication after these health issues have been addressed, but it will at least be appropriate at that point.
Take Advantage of Transition Services
Thanks to the Workforce Innovation and Opportunity Act (WIOA), signed into law in July 2014, transition and preemployment training services will reach our youth starting in the tenth grade, instead of their senior year in high school. Doug Auten and Angela Walker of the West Virginia Division of Rehabilitation Services point out that the benefits of this program include opportunities such as:
Figure 8-1
Figure 8-2
Job readiness skills, including social skills and independent living skills
Job exploration counseling
Work-based learning, both in-school and after-school
Job shadowing
Apprenticeships
On-the-job training
Employment readiness
Job clubs in schools
Field trips to visit potential employers
Counseling on post-secondary training
Trips to visit colleges
Self-advocacy instruction
TIP: Schools can’t single out and approach you or your child specifically for these transition and education services due to privacy issues, so make the first move and let your school know that you are interested while your child is still in school.
Every state and territory of the United States has a Division of Rehabilitation Services (DRS) in charge of implementing these services to youth. Contact your local office and get the ball rolling.
Include Them in the Conversation
If all my possessions were taken from me, with one exception, I would choose to keep the power of communication, for by it, I would soon regain all the rest.
Daniel Webster
“Where are her iPad and Proloquo2Go today?”
I was questioning the care team that had brought Dani, one of my nonverbal adult patients, for a visit. She couldn’t connect or communicate with me that day since her assistive communication device had been left behind, and she spent the visit just silently looking at me and making occasional gestures that I could not interpret. Her caregivers looked sheepish, and one of them said she didn’t have access to it every day because not everyone on the staff was trained in how to use it. Her mother was there for the visit and the surprised look on her face was priceless—she didn’t even know her daughter had a communication device! Talk about a lack of communication.
Communication is essential for health, happiness, and everything in between. Clear communication is essential for safety, learning, and advocating. Social isolation and frustration increase without it. There are a slew of communication methods, apps, and devices, and I consider Proloquo2Go and Touch Chat HD-AAC with WordPower to be two of the best choices (see Week 33 in the Chapter 9 Online Action Plan). These devices can connect your son or daughter to the world and even speak aloud for them and be their voice. If they cannot or will not use such an app, consider the simple Picture Exchange Communication System (PECS). It’s neither complicated nor expensive and is easily adapted to a variety of settings.
My nonverbal patients use a variety of communication styles, everything from high-tech apps to picture exchange systems and sign language, or even grunting and pointing. I’m excited about the new generation of assistive communication technology. Dani can even use hers to order in a restaurant. Her mother should have been included in the training, as well as all the staff members who work in Dani’s home.
Just buying a device or app is not enough. Training and persistence is crucial to success. According to one study, up to 35 percent of those who had purchased an assistive communication device abandoned it, likely due to lack of training.10
Make Driving a Goal
In 2014, I was appointed by the governor to the West Virginia State Rehabilitation Council. It is one of the most rewarding and eye-opening experiences I have had. We were reviewing the budget and needs at one meeting, and transportation consistently ranked as one of the top concerns and expenses. There is always a greater need for transportation than the budget can accommodate.
Rehabilitation counselors and job coaches can prepare an adult for transition to college or a career he enjoys, and employers can offer job openings, but if the individual has no means of transportation to and from the college or job, well, that’s a big problem. Nondrivers have trouble getting to work, classes, doctor’s appointments, the grocery store, and recreational activities. Of great importance is that it can be socially isolating to be a nondriver.
Place Driving Goals in the IEP
One study indicated that actually having driving goals inserted in a teen’s Individualized Education Plan (IEP) in high school was a predictor of driving status.11 The study noted the majority of teens with ASD do not have driving goals in their IEPs and suggested this as an area of improvement we could all shoot for. When I discuss driving goals with the parents of my patients, I often hear that they just assumed their child would never drive. It may turn out that way, but you are guaranteeing it if you never do anything about it. Even if your child just audits the driver’s ed class and rides along in the car as a passenger, she will be savvier about traffic and transportation as a result.
This same study should ease your fears about getting your teen behind the wheel: Only 12 percent of teens with ASD were reported to have gotten a ticket or been involved in an accident. Compare that to 31 percent of all teens who have gotten a ticket and 22 percent who have been in a crash. Turns out that we autism parents are more restrictive with the driving privileges, and our teens like to follow rules—and that’s a good thing.
Indicators of functional status such as being in a mainstream classroom and planning to go to college and have a job increased the odds of being a driver, too.12 The take-home message is to assume that your soon-to-be adult will drive, go to college, and have a career, and then plan accordingly. Talk the talk, or the walk will never happen. Aiming high never hurt anyone.
Get a Developmental Optometry Exam
As you saw in Chapter 1, individuals on the spectrum may not integrate and coordinate the visual input from both eyes correctly, so they may have problems with depth perception and coordination until it is corrected. Don’t declare defeat on the learning to drive project until visual function has been checked out. In fact, get this developmental optometry exam first.
Get Oral Hygiene Under Control
Oral hygiene is of utmost importance for adult health. Several studies show children with autism have poorer oral hygiene and dental health than their neurotypical peers. I know, I know, your child cannot stand to have his teeth brushed and flossing is out of the question. That’s why it’s common for those with overwhelming sensory issues to be sedated for dental cleaning and procedures.
A fair number of my adult patients simply reply “no” when I ask if they brush or floss, which of course sets them up for gum disease and loss of teeth. That’s why I have them use xylitol and probiotic oral care products at the very least. If they have to have sedation dentistry, let’s try to prevent as many reasons for it as we can. Don’t just throw up your hands and claim helplessness; this area of healthcare is important enough to fight for. Consult with a feeding specialist who may be able to help your son or daughter learn to tolerate the sensations associated with brushing and flossing.
Having good oral health contributes to overall health. Check out the dental hygiene tips in Week 48 of the Chapter 9 Online Action Plan to ensure maximum health and independence for your adult son or daughter.
Changing the Standards of Care
It will take years of trial and error for the standards of medical care for those on the autism spectrum to develop and change. Table 8-1 shows us what we know so far.
MINIMUM BASIC CATEGORIES FOR HEALTH ASSESSMENT
GI dysfunction
Microbial imbalance
Immune dysfunction
Neuroinflammation
Oxidative stress
Nutritional deficiencies
Developmental optometry evaluation
Mental health screening for anxiety, depression, and mood disorders
Table 8-1
In addition to the basic health assessments, have a plan for aggression where medication is the last, not the first, thing we reach for. Irritability, self-injuring, poor sleep patterns and aggression should be evaluated in light of:
Hidden pain and discomfort, especially in the GI tract
Overstimulation by a noisy environment
Frustration at not being able to communicate
Mood disorders
Side effects of medications and polypharmacy
Gluten intolerance
Food allergies and sensitivities
Basic needs should be met for optimal function and independence, dignity, and quality of life. These basics include:
A form of communication that the adult and everyone around him is comfortable using
ON AUTISM.COM: “Keys to Successful Independent Living, Employment, and a Good Social Life for Individuals with Autism and Asperger’s” by Temple Grandin
Assistive communication devices, if applicable, with effective training for family members and all caregivers
Counseling for social skills and building relationships
Social opportunities and inclusion in the community
Driving goals in the young adult’s high school IEP and transition plan
A driver’s license, if appropriate, or access to transportation
Opportunity for college or vocational training
Meaningful employment that the ASD adult enjoys and looks forward to
A “medical home” for all medical records and coordination of care
Basic GI and Immune Support Protocols
Long-term Health Maintenance Protocols that adults with ASD can follow themselves, if possible
Developmental optometry evaluation
Excellent oral care, including probiotic and xylitol oral care products
Occupational therapy and a sensory diet for managing sensory overload
Management of anxiety
Consideration given to natural supplements for residents on the autism spectrum, since so many of the helpful prescriptions have side effects that may amplify and worsen constipation, nausea, anxiety, and sleep problems
Not every adult in a group home has a parent still actively involved in his life. By being an activist and educating the facility’s staff about the medical challenges of ASD, and how addressing them correctly can improve health, mood, sleep, language, and function, you will also be an advocate for those adults with ASD who have no one to speak for them.
Give your adult sons or daughters their best chance for an independent life by assessing and addressing the health challenges of the autism spectrum, no matter what their living arrangement. They will be healthier, happier, and cognitively at their best if you do.