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Autism Spectrum Disorder

10 Things Every Child with Autism Wishes You Knew

By: Ellen Notbohm

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute, the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it.

Equipping those around our children with a simple understanding of autism’s most basic elements has a tremendous effect on the children’s journey towards productive, independent adulthood. Autism is an extremely complex disorder, but we can still distill it to three critical components: sensory processing difficulties, speech/language delays and impairments, and whole child/social interaction issues.

Here are 10 things every child with autism wishes you knew.

1.  I am a child with autism. I am not “autistic.” My autism is only one aspect of my total character. It does not define me as a person.  Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? 

2.  My sensory perceptions are disordered. This means that the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself.

A “simple” trip to the grocery store may be hell for me. My hearing may be hyper-acute. Dozens of people are talking at once. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples… I can’t sort it all out. I am dangerously nauseated. 

Because I am visually oriented, this may be my first sense to become overstimulated. The fluorescent light is too bright. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There’s glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus (I may compensate with "tunnel vision"). All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.

3.  Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to).  

Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: *&^%$#@, Billy.  #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.”  This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply. 

4.  I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5.  Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, or the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6. I am very visually oriented because language is so difficult for me. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations. 

7.  Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.”  Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided.  Look for my strengths and you will find them. There is more than one “right” way to do most things.

8.  Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation.  If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. 

9.  Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload.  If you can figure out why my meltdowns occur, they can be prevented.  Keep a log noting times, settings, people, activities. A pattern may emerge.

Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.   

Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10.  If you are a family member, please love me unconditionally. Banish thoughts like, “If he would just…” and “Why can’t she…” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.

And finally, three words: Patience. Patience. Patience

Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? 

Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. 

They had autism too.

AAC- Alternative and Augmentative Communication

AAPEP- Adolescent and Adult Psychoeducational Profile

ABA- Applied Behavioral Analysis

ADA- Americans with Disabilities Act

ADI-R- Autism Diagnostic Interview- Revised

ADOS- Autism Diagnostic Observation Schedule

ADL- Activities of Daily Living

AIT- Auditory Integration Training

APE- Adapted Physical Education

AS- Asperger’s Syndrome

ASA- Autism Society of America

ASDS- Asperger Syndrome Diagnostic Scale

CA- Chronological Age

CARS- Childhood Autism Rating Scale

CDD- Childhood Disintegrative Disorder (Heller’s Syndrome)

CELF-5- Clinical Evaluation of Language Fundamentals- 5th Edition

CSBS- Communication and Symbolic Behavior Scales

DD- Developmental Disability

DOB- Date of Birth

DSM-5- The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition

DTT- Discrete Trial Training

ERIC- Education Resources Information Center

ESY- Extended School Year

FA- Functional Assessment or Functional Analysis

FAPE- Free Appropriate Public Education

FC- Facilitated Communication

FERPA- Family Education Right and Privacy Act

GADS- Gilliam Asperger’s Disorder Scale

GARS-3- Gilliam Autism Rating Scale- 3rd Edition

HFA- High Functioning Autism

IDEA- Individuals with Disabilities Education Act

IEP- Individualized Education Program

IFSP- Individual Family Service Plan

IHP- Individualized Habilitation Plan

IQ- Intelligence Quotient

ISP- Individual Service Plan

JADD- Journal of Autism and Developmental Disorders

KABC- II NU- Kaufman Assessment Battery for Children, Second Edition Normative Update

LRE- Least Restrictive Environment

M-CHAT- Modified Checklist for Autism in Toddlers

MDT- Multidisciplinary Team

MLU- Mean Length of Utterance

MR- Mental Retardation

NICHCY- National Information Center for Children and Youth with Disabilities

NIH- National Institutes of Health

OCD- Obsessive Compulsive Disorder

ODD- Oppositional Defiant Disorder

OSEP- Office of Special Education Programs

OSERS- Office of Special Education Rehabilitative Services

OT- Occupational Therapist, Occupational Therapy

P & A- Protection and Advocacy

Part C- Refers to the Early Childhood portion of IDEA

PBS- Positive Behavioral Supports

PECS- Picture Exchange Communication System

PEP-3- Psychoeducational Profile- 3rd Edition

PLS-4- Preschool Language Scale- 4th Edition

PPVT-3- Peabody Picture Vocabulary Test- 3rd Edition

PT- Physical Therapist, Physical Therapy

SI- Sensory Integration

SIB- Self-Injurious Behavior

SLP- Speech-Language Pathologist

SSI- Supplemental Security Income

SSDI- Social Security Disability Income

SSRI- Selective Serotonin Reuptake Inhibitor

TARPS- Test of Auditory Reasoning and Processing Skills

TEACCH- Treatment and Education of Autistic and related Communication handicapped Children

TOPS- Test of Problem Solving

WPPSI-R- Weschler Preschool and Primary Scale of Intelligence- Revised

WISC-IV- Weschler Intelligence Scales for Children, 4th Edition

Social Skills

Too Noisy Pro

Anyone who has attempted to keep the noise levels under control of a group of youngsters will appreciate this simple, fun and engaging app.

What Would You Do at School If… Fun Deck

This colorful, educational social skills App for the iPhone®, iPad®, and iPod touch® has all 56 illustrated picture flash cards (plus audio of each card text) from the What Would You Do at School If … Fun Deck® by Super Duper® Publications. Select the cards you want students to see, and have them work on solving problems and practicing good social skills as they discuss situations in and around school. 

 

Self-Calming/Self-Awareness

Breathe2Relax

Breathe2Relax is a portable stress management tool which provides detailed information on the effects of stress on the body and instructions and practice exercises to help users learn the stress management skill called diaphragmatic breathing.Breathing exercises have been documented to decrease the body’s ‘fight-or-flight’ (stress) response, and help with mood stabilization, anger control, and anxiety management.

Sleep Meditation for Kids

This is a superb high quality children's meditation app by leading yoga teacher and Montessori teacher Christiane Kerr.

Created for children of all ages, Christiane skillfully guides children to the creative part of their mind through a number of carefully scripted story meditations. These deeply relaxing recordings can help your children with sleep issues, insomnia, stress, anxiety and with feelings of confidence and well-being.

 

Speech, Sign Language, & Augmentative Communication

ASL Dictionary

ASL Sign Language Dictionary. Over 5,200 Signed words in ASL. The most complete ASL American Sign Language Video Dictionary. Translate English into ASL, from A-Z, plus the entire numerical system, common English phrases, symbols and much more. A must have educational iPhone, and iPad app.

 

Behavior

Time Timer

What happens when you can see time? Stress-free productivity. Turn your smartphone or smartwatch into a fun and easy visual timer. The Time Timer app features an iconic red disk that disappears as the seconds go by. Perfect for school, work, home or gym. It makes time make sense.

Start improving your time management skills with one simple swipe of your finger or twist of the Apple Watch’s digital crown. That’s all it takes to set the length of your timer; then hit play to start the visual countdown.

Time Timer® is the ORIGINAL timer to turn the passage of time into something visual and concrete.

Social Skills

iCreate Social Skills Stories

iCreate... Social Skills Stories is an application with the ability to totally customize sequential steps of a storyline for individuals that need help building their social skills. The app is designed to make unlimited personalized social skill story books by importing personal photos, adding titles, text and audio to unlimited pages into your own story. All the books can be re-arranged in an order specific to daily routines. 

Model Me Going Places 2

Model Me Going Places™ is a great visual teaching tool for helping your child learn to navigate challenging locations in the community. Each location contains a photo slideshow of children modeling appropriate behavior.

Social Adventures

The Social Adventures App provides clinicians, teachers and parents with a treasure trove of activity descriptions for teaching social skills and friendship. Children ages 3-13 with social needs such as those associated with Autism Spectrum Disorders, ADHD, NLD, Sensory Processing Disorders and social anxiety will gain confidence and success in navigating the rough waters of relationships.

Too Noisy Pro

Anyone who has attempted to keep the noise levels under control of a group of youngsters will appreciate this simple, fun and engaging app.

What Would You Do at School If… Fun Deck

This colorful, educational social skills App for the iPhone®, iPad®, and iPod touch® has all 56 illustrated picture flash cards (plus audio of each card text) from the What Would You Do at School If … Fun Deck® by Super Duper® Publications. Select the cards you want students to see, and have them work on solving problems and practicing good social skills as they discuss situations in and around school. 

 

Self-Calming/Self-Awareness

Breathe2Relax

Breathe2Relax is a portable stress management tool which provides detailed information on the effects of stress on the body and instructions and practice exercises to help users learn the stress management skill called diaphragmatic breathing.Breathing exercises have been documented to decrease the body’s ‘fight-or-flight’ (stress) response, and help with mood stabilization, anger control, and anxiety management.

Fluidity

A beautiful interactive realtime fluid dynamics simulation, control fluid flow and stunning colours at the tips of your fingers.

In-App purchase enables ambient audio, double tap screen to take a snapshot, settings storage, and menuless video out using VGA, Component or Composite cable.

Heat Pad- Relaxing Heat Sensitive Surface

This app simulates various heat-sensitive surfaces reacting to the heat of your fingertips. Simple, yet surprisingly relaxing and entertaining! Play alone or let your fingertips meet other fingertips from all around the world and doodle on the same surface!

Sleep Meditation for Kids

This is a superb high quality children's meditation app by leading yoga teacher and Montessori teacher Christiane Kerr.

Created for children of all ages, Christiane skillfully guides children to the creative part of their mind through a number of carefully scripted story meditations. These deeply relaxing recordings can help your children with sleep issues, insomnia, stress, anxiety and with feelings of confidence and well-being.

 

Speech, Sign Language, & Augmentative Communication

ASL Dictionary

ASL Sign Language Dictionary. Over 5,200 Signed words in ASL. The most complete ASL American Sign Language Video Dictionary. Translate English into ASL, from A-Z, plus the entire numerical system, common English phrases, symbols and much more. A must have educational iPhone, and iPad app.

Sono Flex

Tobii Sono Flex is an easy to use AAC vocabulary app that turns symbols into clear speech. It offers language to nonverbal users who are not yet in full control of literacy. Sono Flex combines the benefits of structure and flexibility, providing a framework for language development, quickly matching individual and situational communication needs. Tobii Sono Flex has been designed to be easy to operate and easy for SLPs, teachers, parents, caregivers or other communication partners to setup and customize.

 

Behavior

iReward

iReward is a motivational tool for your iPhone, iPod Touch, or iPad. You can create a star chart or token board to help reinforce positive behaviors using visual rewards. Use of motivational charts is not limited to any one group. We all benefit from motivation to achieve our goals! This type of praise or approval will help parents of typically developing children, children with autism, developmental delays, ADHD, and anxiety disorders. We've updated the app to support multiple users and added more customizable options.  

Time Timer

What happens when you can see time? Stress-free productivity. Turn your smartphone or smartwatch into a fun and easy visual timer. The Time Timer app features an iconic red disk that disappears as the seconds go by. Perfect for school, work, home or gym. It makes time make sense.

Start improving your time management skills with one simple swipe of your finger or twist of the Apple Watch’s digital crown. That’s all it takes to set the length of your timer; then hit play to start the visual countdown.

Time Timer® is the ORIGINAL timer to turn the passage of time into something visual and concrete.

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