The media reports heavily about autistic children. Autistic adults are just now gaining a voice. For a long time, autistic adults were invisible. But we do exist. Some of us live independently; engage in intimate adult relationships; go to college or receive advanced training for a career; work; make friends; and participate in the community. Others of us can not or do not.
Most of us have a mix of strengths, talents, and challenges. I have a master's degree but I have struggled incredibly to find vocational success. I am articulate and outspoken, but sometimes I lose the ability to communicate verbally. I can "pass" and sometimes appear totally normal whatever that means! But I have very low body awareness. I've almost passed out from not eating because I can't tell when I'm hungry. I can conduct advanced research, but I need a visual schedule for many daily tasks. I can be stressed out by ordinary noises and lights and I prefer to eat alone. I usually wear dark sunglasses, ear plugs, and heavy wool clothes to cope with sensory issues, making me stand out in a crowd when that is not what I'm after. Despite my challenges, my autistic way of being is the only one I've known. So to me I am normal. I actually like the way I am and I perceive benefits to the way I am.
Parents need to realize that autistic adults look and behave differently than autistic children. We have developmental delays, but we do mature. Just at our own pace. The gap widens as we age. We may be nowhere near ready at age 18 to do what most 18 years olds are doing. But that just means we are on our own trajectory. We do learn from experiences, too. Often people will say, "You don't seem that autistic" to autistic adults in their 40s, 50s, or 60s. But we've had 40 years or more to figure out a few things! For example, to develop some coping strategies, or to decipher the most pressing social expectations (even if we can't or choose not to do all of them). This shouldn't invalidate where we've been, how hard it still might be, or how much support we may need in certain ways. Or vice-versa! Maybe it's hard for you to see just how many skills your "baby" has gained - even though you knew him at a time when he wasn't so independent.
• Autistic Children Have It Worse Than Autistic Adults or the Reverse
Parents ask me all the time if things are better now that I am an adult. Instead, I view autism as something that evolves over the lifespan.
As a child I was sheltered - fairly lost and comfortable in my lonely but safe world. But late in elementary school, I felt very sad because the gulf between me and my peers became insurmountably wide. I didn't have a choice about going to school. I had to deal with the other children who were there and they were very cruel to me. I dropped out of school but not for academic reasons at all. I lived on the road for a period of time, and in the wilderness, in a vagabond kind of way. While I faced many dangers during this period, and while I might be living a very different kind of life had I been diagnosed correctly as a small child and received the supports I so desperately needed, I did learn a tremendous amount about being human. I did have some absolutely incredible experiences! I was always conducting research, doing scientific experiments, educating myself, utilizing public libraries and open telescope nights. I came to understand much about how people live and exist with one another and I came to learn so much about our Earth and the galaxy we are spinning in.
As an adult, of course, I have the freedom to associate with whomever I choose. Adults, by definition, are supposed to be more mature than children. As an adult it has been easier to find a niche. While social pressures have eased, vocational and relationship issues have loomed larger. This is why I say autism evolves over time.
A child may struggle mostly with sensory and learning issues in the classroom, but enjoy a structured social outlet at Boy Scouts or church. But when the child reaches middle school and high school, social pressures may make it extremely difficult to survive those years unscathed. Success at college, in a career, or at work can replace lost self-esteem and lead to a meaningful life in society. But without careful planning and guidance, the pressures of adulthood can outstrip the opportunities for acheivement.
This is why I believe it is important for all autistic children to know about their diagnosis, to plan for a whole lifetime, and to build on autistic strengths from an early age. Armed with self-knowledge, strategies, and information about what to expect at different stages of life, an autistic person can more fully reach his or her dreams and avoid disasters.
• Autism Can Be Cured
Nobody can cure autism. If a professional, doctor, or program claims to have a "miracle cure" watch out because you are being duped. Some treatments and interventions may help in a variety of ways. For example, a number of therapies can help autistic people manage or reduce sensory discomfort. Educational methods can help autistic people, especially autistic children, learn adaptive, academic, and relationship skills. When autistic children gain a way to communicate, their frustrations may ease. It is also true that autistic children mature as they grow up, which can result in positive behavioral changes. But autism is a brain-based neurological difference. It doesn't go away.
Several organizations, individual practitioners, and some parents are claiming that their children have totally "recovered" from autism. They view autism as a medical illness that can be cured with the right drugs and medical protocols. Much debate exists regarding what constitutes total recovery. Many teenagers whose parents claimed they were recovered in childhood report thinking, perceiving, and living in the world with a brain that is still autistic. As a community, we need to discuss several issues: How can we talk about children who make enormous strides when young without making them feel pressured to have absolutely no problems later on in life? What's the difference between shooting for normalcy versus shooting for quality of life? Do autistic children indeed have specialized health care needs that should not be ignored under any circumstance? Can we define the difference between providing adequate medical care for mental fogginess, allergies, inability to concentrate, insomnia, and digestive problems, common among children on the spectrum, versus dangerous cures with unscrupulous goals?
• Diet Can Cure Autism
Special diets do not cure autism.
However, it is clear that what you eat impacts your health. When you eat lots of junk food, you don't feel so good. Diet does impact mood & physical health. I saw first-hand an increase in one of my daughter's verbal output and articulation as well as less spaciness and less "stimy" behavior when she became strictly gluten-free as a young toddler. She is no longer on a gluten-free diet at this time.
When placed on a special diet, some children with autistic behaviors suddenly gain language and social skills, stop having sensory problems, and make developmental gains. Several explanations are possible: One, maybe the child did not have autism per se, but his nervous system was so damaged by food toxins that his behaviors appeared autistic - e.g. sensory issues, loss of language, unusual motor movements, or repetitive behaviors. Remember, autism is defined by behaviors, not a blood test. Once the offending items were removed from his diet, he "recovered" - but from severe food allergies, not autism! Two, a subset of autistic children may also have concurrent food allergies or immune issues. In this case, the child remains autistic, but his autistic behaviors appear less severe or "practically disappear" on the diet because the behaviors and problems caused by the food toxins are now eradicated. Three, scientists and doctors are currently conducting research to see if autism has an auto-immune or digestive component that may respond to interventions such as a change in diet. I am NOT trying to say that different types of autism exist, or certain types are more "valid" than others. I am saying that scientific research is not in.
Going gluten-free and casein-free is not considered harmful as long as the person receives enough nutrition from other foods. Watching your child's diet or your diet as an adult on the spectrum may not be a miracle cure, but the diet may help with allergies, skin rashes, digestive complaints, attention span, asthma, feeling sluggy, inability to learn, and your overall physical condition. If you're thinking about trying the diet, read more about it here.
Just please realize that there is no cure for autism. Most people on the autism spectrum will be autistic no matter what they eat. The diet is an intervention that improves quality of life - it does not impart normalcy. A very young child who makes developmental gains on the diet mmay have other problems at other ages and different stages of life. Parents should not feel guilty and should never be blamed for their child's autism. And small children who "recover" in toddlerhood should not be shamed or made to feel like failures if issues and challenges resurface when their worlds expand and demands for social competance and independence increase.
• Some Children "Outgrow" Their Autism
Autistic children do mature. They may gain new ways to communicate, reducing frustration. They may learn better ways of coping with their emotions, something all children have to learn. They may become less rigid or fixated on routines, resulting in greater participation in family and community life, especially if they receive quality early intervention and excellent support at home and at school. Their social skills and social life may become more complex, too. But autistic children do not "outgrow" their autism as they age.
Sometimes a child has delays and behavioral issues, but this can be due to other problems. For example, children who are chronically ill as toddlers are often behind their peers in language and social skills. Also, babies born premature often experience sensory integration problems and developmental delays. They may be incorrectly diagnosed as autistic based on behaviors that look just like autism, but most preemies and children with chronic illnesses who receive proper medical, social, and educational support catch up through the elementary school years because the delays are not pervasive. Suddenly people say, "See, she outgrew her autism!" - creating much confusion. Autism is a pervasive developmental delay that does not magically disappear.
• Autistic Adults Should Just Try Harder
Almost all of us on the spectrum have heard this before. If we just tried harder, we could make friends. If we just tried harder, we could hold down a job. If we just tried harder, we could take care of ourselves.
The truth is, most of us are trying harder than anyone else on Earth!
For those of you on the spectrum, just take a deep breath the next time someone tells you that you aren't trying hard enough and then remind yourself of all the million little ways you try so hard every day to navigate through a world that is so complex, so hard to decipher, so loud, so social, so taxing. You are doing a great job!
• Autistic Adults Have Terrible Lives
I can't speak for every single autistic individual. Most of us have experienced times of difficulty, even great difficulty. But ultimately, I believe that all humans have the capacity to find joy in the people, animals, objects, and activites they like. Our sources of joy, from the simplest to the most complex, keep us going and make all lives sacred and important. It is not true that our lives are terrible. We are just different.
• Autistic People Diagnosed As Adults Can't Benefit From Treatments and Therapies
This is not true. One of my first memories is the pain in my eyes I experienced when I walked from my dark bedroom to the bright hallway as a small toddler. Ever since elementary school, I have worn sunglasses indoors. I also have severe convergence issues. Just because I didn't realize I was autistic until I was 31 doesn't mean I can't now make use of interventions and therapies to reduce my sensory discomfort if I find them helpful.
If you are an adult on the spectrum and you want to try a therapy or intervention that you think might help you - many of which weren't even invented when we were children - go ahead. Just be a wise consumer, as you would with anything you want to try. Don't fall for scams or miracle cures, and watch out for unscrupulous professionals whose only goal is to use your vulnerabilities to con you out of a lot of money.
• Only "High-Functioning" Adults Talk About Autistic Strengths
This is definitely not true!
First of all, many leaders in the autistic self-advocacy movement were greatly challenged as children and continue to deal with great challenges as adults. It is a complete misconception that only the "highest functioning" autistic adults speak and attend conferences, write about their experiences, go to college, hold down jobs, form relationships or have children, advocate for their rights, or live independently.
Second of all, I believe firmly that even the most severely challenged - on or off the autism spectrum - have gifts to offer the people around them and society in general. Everyone has gifts, strengths, interests, ideas, and feelings. Everyone.
Third of all, "high functioning" is a confusing term. Certainly, if you can go to college, take a bus downtown, and buy more toothpaste when you run out, what you worry about and what you go through is different than someone who can't do those things. But often, those labeled "high functioning" go in circles. They are so high functioning, for example, that they do not qualify for state services - yet they can't hold down a job or secure a safe and stable place to live. Since some autistic adults can talk, nobody understands how much effort it takes to do so and how quickly and easily someone can slip into shut-down mode.
Sometimes people don't believe that autistic adults with many skills are disabled. And then when we do succeed, they have no idea just what we went through to get where we are now. My point is, nothing is so easy. Labels rarely describe the whole picture.
Labels do not automatically correspond to how happy you are, how much you enjoy life, or how much trouble you experience on a daily basis.
All kinds of autistic people from all over the spectrum with a mix of talents, strengths, and challenges are contributing to their families, their communities, the autism community, and society-at-large, doing the best that they can, breaking down stereotypes, and asking us to literally redefine our notions of disability, possibility, and humanity.
Autism Issues in Adulthood
Sensory Crashes
Slow Processing
Visual Thinking As An Autistic Strength To Build On
Who Are We Anyway?
• Sensory Crashes
Sometimes when we are overwhelmed by emotions, by the environment, or by a situation, some of us experience what I call a "sensory crash". In that moment, processing any more information or incoming sensory signals is not possible. We may find it difficult to communicate. We may also lose our physical coordination or executive functioning. The "crash" phase can last anywhere from a few moments to a few days. I mention this because we may not know that this can happen to us, leaving us wondering what is going on. I believe that "normal" people also experience this - they become overwhelmed, and so they retreat too, until they regain their composure.
The best remedy is to find a quiet spot away from the source(s) of distress, if possible, and to disengage in further interactions and discussions, if necessary. Try using Emergency Cards with loved ones, friends, and allies to explain you need a break, a strategy I discuss in greater detail in my book, Life and Love: Positive Strategies for Autistic Adults. If you have a sensory crash in the middle of situation you can't leave, try using a natural break in the activity to recompose yourself. For example, at work you can use your lunch time or at a restaurant you can use the bathroom. If it is impossible to take a break, or a short break isn't enough time, keep yourself together and ask permission to leave early or excuse yourself politely. You can always say you don't feel well. This is true, and it is something that others understand.
• Slow Processing
Autistic people have a tendency to process thoughts and emotions slower than others. Usually, parents and teachers will need to give an autistic child longer to answer questions, complete tasks, follow instructions, or explain himself. These processing delays persist into adulthood.
But what happens in the rapid-fire world of adults when you have processing delays? In terms of interactions, people may become impatient waiting for us to answer questions, or may jump to the conlusion that we are ignoring them. At work, we may get in trouble for taking too long. Police, emergency personnel, and professional service providers may assume we are uncooperative if we can't explain what we are doing or how we feel quickly. At school, on the street, and "in life" we may not be able to make social decisions fast enough to keep ourselves safe.
If you notice that you process very slowly, preparing in advance can save a lot of trouble. Use a visual aid or an Emergency Card to let others know you need more time. You can use Emotion Scales to determine the "amount" of a feeling when faced with a social decision to help guide you in what to do. An entire chapter of my book is devoted to safety strategies like these that precisely address safety gaps arising from slower processing rates, and other chapters have great suggestions for dealing with processing rate challenges that arise in relationships of all sorts.
At work, visual schedules can help you stay on track. Also, if you are assigned a special project, ask the boss in advance how much time he expects it will take you to complete the task. If you are sure that you can't meet this expectation, asking for additional time or an assistant in advance can prevent the project from falling apart.
Don't forget to be patient with yourself. Leave extra time if you have to go somewhere. Sit down for a few minutes and determine what you want to say or do. This "deep breath moment" is actually an autistic strength that our super-hectic super-fast super-hasty society could really benefit from.
• Visual Thinking As An Autistic Strength To Build On
One of our greatest strengths can be our visual thinking skills. Many of us can "see" a process, an interaction, a method, or a structure in our minds, which can sometimes be applied to a vocation. Many of us can also "catalog" visual dictionaries that help us navigate through our lives. We often love studying, creating, and using maps and schedules.
This skill can also be used to meet many everyday challenges. For example, in
Chapter 4 of my book, I talk about using visual thinking skills to conquer grocery shopping. By drawing a map of your grocery store, or by using a copy of the store's floor plan, you can create a visual order to your shopping trip that makes the whole experience less daunting.
• Who Are We Anyway?
Autistic adults are all different. Each and every one of us is unique.
Visit the Autistic Adults picture project to learn more about autistic adults, our lives, and who we are in our own words. Can you find me? I'm on page 9.
Also watch the movie Mozart and the Whale - a wonderful and romantic film based on the real lives of Mary & Jerry Newport, two adults on the spectrum who fall in love & get married.
Services for Adults
Zosia is trying to create a list of services for adults and service providers who work with adults. If you know of a service or provider who you would like to see added to this list, please email Zosia. Thanks! Again - these links are listed here for informational purposes only.
Government Services
Therapists
• Government Services
Government Services Listed by State
compiled by Asperger Foundation International
More coming soon!
• Therapists
New Jersey
Patricia Hart, MSW
(609) 921-2756
Princeton
*specializes in adults on the spectrum
New York
Irene Brody, PhD
(845) 657-5847
Woodstock
*also does educational consulting and family advocacy
Valerie Gaus, PhD
(631) 692-9750
Long Island
*specializes in Cognitive Behavioral Therapy
Linda Geller, PhD
(212) 679-3948
New York City
Self-Advocacy Links: Provided as an Informational Service
• Autistic Self-Advocacy Network
• ANI: Autism Network International
Favorite Books & More
• Books
Check out the resources section of the page for parents of autistic children for a list of favorite books.
• Websites
Autistic Adults Picture Project - I'm on page 9!
• Movies
Mozart and the Whale: The Movie - A fantastic film that realistically portrays our lives as Autistic adults.
Work Issues for Autistic Adults
January 2008: I am currently taking a class on vocational counseling as part of my program in rehabilitation counseling. I wrote a bit about work issues for autistic adults in my book Life and Love: Positive Strategies for Autistic Adults. The class has inspired me to post some information here about these issues.
What I think is most daunting for us is the social skills that are the framework for any job. You can have all the work-related skills in the world but if you don't know how to navigate socially then success will be elusive. Here is a quick example: When I got my "dream internship" working as a science writer at the American Museum of Natural History, I thought that all I had to do was write. I have very strong writing and researching skills. I had no idea that at least half of it - if not more - had to do with promoting yourself, befriending key people, going to lunch with colleagues, developing friendships, and joining Museum life. I would still be sitting up there in the library writing right now, happy as can be, if we were judged simply by our merit and the worth of our contributions. But so much more goes into a job and this is where I think we have the greatest trouble. Think about this list of social skills that can be required on an average day. These are all things those of us on the spectrum don't natuarally do or must learn consciously. And learning doesn't happen one time - the social world is ever-evolving.
Sample List of Social Skills Used in the Work Place
• shake hands at the right moments and with the right pressure and speed
• remember rules of polite interaction
• remember pleasantries like, Good morning
• determine when to exchange pleasantries
• determine whom to exchange pleasantries with versus when to leave someone alone
• determine tone of voice and content of pleasantries during delivery, depending on audience (boss vs. UPS man)
• decode idiomatic expressions
• decode humor
• respond appropriately to humor
• offer humor appropriately
• keep up with social expectations (for example, lunch requests)
• determine with whom to chat
• determine when and how to chat casually
• determine the content of a small chat
• modulate voice during the chat
• listen carefully for conversational clues that indicate interest, boredom, confusion, etc.
• determine one’s turn to talk/respond
• respond appropriately to what the other person contributes to the chat
• handle interruptions smoothly even when frustrated
• notice the feelings and comfort level of others
• respond to co-workers who may be dissatisfied, upset, hurt, or confused by you
• respond to co-workers who may be happy, satisfied, concerned about, or jealous of your work
• receive and give constructive criticism
• handle requests and complaints from customers, clients, suppliers, boss, etc.
• organize desk and projects with regard to others working in the same environment
• share and ask for supplies
• communicate regarding sensory issues
• figure out social norms
• compensate for sensory issues without overstepping social norms (for example, sunglasses OK at desk but not at executive meeting)
• cope with the irritating behavior of others (for example, slurping coffee or snapping gum)
• defend oneself against unjust accusations politely, while at the same time take responsibility for weaknesses constructively
• know when to ask for help (and when not to!)
• formulate appropriate requests for help
• balance the need for help with the ability to learn/work independently (for example, balance seeming too dependent versus seeming too independent)
• pick up slack left by lazy coworkers without being used
• decode social politics (for example, why person X complains about person Y, then treats Y to lunch)
• determine personal boundaries (for example, determine if someone is taking advantage of you by asking you to do her filing or is within the normal range for work friends)
• ask for clarification of tasks, requests, jokes, conversational meanings, and innuendos
• explain problems and relay relevant details
• balance priorities, responsibilities, and loyalties to different people
• know when to do a favor versus when to report an ethical or behavioral irregularity (for example, to tell the boss person X is late again for the 50th time, or not)
Information for Autistic Adults
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