Deconstructing Myths About Autistic Adults
Autistic Children Don't Grow Up
Autistic Children Have It Worse Than Autistic Adults (or the reverse)
Autism Can Be Cured
Diet Can Cure Autism
Some Children "Outgrow" Their Autism
Autistic Adults Should Just Try Harder
Autistic Adults Have Terrible Lives
Autistic People Diagnosed as Adults Can't Benefit From Therapies & Treatments
Only "High-Functioning" Adults Talk About Autistic Strengths

• Autistic Children Don't Grow Up

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. For example, I can't handle lots of socializing, but I am married to my partner. I have a master's degree but 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!) until you see me waving my hands around, or witness my confusion when I have to order dinner in a restaurant. I usually can't tell how I feel. 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 visual aids to take a shower, otherwise I can't organize what I'm supposed to do. I can be stressed out by ordinary noises and lights and I have 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.

• 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 in middle and high school, I was horribly depressed because the gulf between me and my peers became insurmountably wide. I didn't have a choice about going to school, so I had to deal with the other children who were there, and they were very cruel to me. The result of all this emotional pain, plus the repression I felt because I did not have a correct diagnosis, led to many years as a young adult, wandering, literally, around the United States, unable to come to any conclusion about my life. 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, I did learn a lot, I did have some fun, and I came to understand much about how people live and exist with one another.

As an adult, I have the freedom to associate with whom I choose. Adults, by definition, are supposed to be more mature than children, and as an adult it is 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 have a structured social outlet at Girl Scouts or church. But when she reaches middle school and high school, social pressures may make it extremely difficult for her 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.

• Autism Can Be Cured

Nobody can cure autism. If a professional, doctor, or program claims to have a "miracle cure" you are being duped. Some treatments and interventions may help some, all, or a few Autistic people in a variety of ways. For example, some 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 do 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.

• Diet Can Cure Autism

Special diets do not cure Autism.

It is clear that what you eat impacts your health. When you eat lots of junk food, you don't feel so good. I tried the gluten-free and casein-free diet for one year. The diet was difficult for me to follow because I don't eat meat. But I survived. I noticed an improvement in my proprioceptive sense - I had a better idea of "how big" my body is and how I moved around in space. I chose not to stay on the diet for reasons of convenience, though I continue to be very careful about what I eat.

When placed on a special diet, some children with autistic symptoms suddenly gain language and social skills, stop having sensory problems, and make developmental gains. In this case, two explanations are possible: One, 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. 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. In this case, the child remains autistic, but his autistic behaviors appear less severe on the diet because the behaviors and problems caused by the food toxins are now eradicated.

Going gluten-free and casein-free is not considered harmful as long as the person receives enough nutrition from other foods. Diet probably does impact mood & physical health, so watching your child's diet or your diet as an adult on the spectrum may not be a miracle cure but may help with allergies, skin rashes, digestive complaints, attention span, asthma, feeling sluggy, & overall physical condition. If you're thinking about trying the diet, read more about it here . But parents need to realize that there is no cure for autism. Be careful about claims of enormous gains made on the gluten-free and casein-free diet. Most people on the autism spectrum will be autistic no matter what they eat. Even if some gains are made, the child may 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.

• 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. 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, but most preemies catch up through the elementary school years. Suddenly people say, "See, she outgrew her autism!" - creating much confusion.

• 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 objects, people, animals, 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. But I am skeptical of any therapy, program, or intervention that suggests I can be cured as if I have a disease, or that suggests I can become "normal" - I am who I am.

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, 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 of us labeled "high functioning" find ourselves going in circles. We're so high functioning, for example, that we do not qualify for state services - yet we can't hold down a job or secure a safe and stable place to live. Since we can talk, nobody understands how much effort it takes to do so and how quickly and easily we slip into shut-down mode. Sometimes people don't believe we 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. I know some "high functioning" people that are having more trouble than people labeled "not high functioning". 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.

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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 lose the ability to be verbal or otherwise 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.

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 their 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 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.

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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