autism awareness

Something for Everyone. A Few of My Favorite Autism Resources

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I am fortunate to live near a Big 10 university and know some pretty progressive professors who let me come in to their classes every year and speak freely as an expert.

Why is that so progressive? 

Well, for starters,they are not tapping into my professional expertise as a clinical social worker, advocate or behavioral therapist, but rather into my expertise as a parent of a child with a life long disability.

Also, in both my undergraduate and graduate studies in helping professions, not once did we talk about disability perspective or experience from the direct report of the person or caregiver dealing with what we were learning.

As the years go by and awareness grows, those of us who both work in the field of developmental disabilities and who also live in it has grown exponentially.

Have 14 extra minutes?  Here is the  TEDx Talk I gave a few years ago about the experience of living and working “in the field”. 

I am always honored and humbled to speak to our future social workers, nurses, allied health professionals, teachers and physicians.  As raw as it might be, I lean into authenticity even when it means I share my political leanings, mostly because those leanings have turned into shovings because my baby’s future is at stake all the time. He needs more than me and a bunch of warrior moms. We need front line people to understand and advocate too.  My end goal in about an hour and half to impart all of the things books won’t tell them. What it is like to deal with broken systems, where I have gone to understand how those systems work and the qualities of professionals who have had the most impact in our lives.

I do not have all the answers, the knowledge or perspective. I only have my own.

After almost 16 years of parenthood and about 30 years of social services experience, I have compiled some resources from my personal helping library. My experience both personally and professionally have led me to seek out some pretty specific things. Here are some tips to keep in mind when attempting to gain an inside perspective or personal narrative in the world of resources:

  1. Is there any research behind a method? If not, are they pretty clear about that?
  2. Does the resource have any input from someone with a disability/caregiver?
  3. Does the “helping” resource ensure the individual’s dignity while still helpful?
  4. Does the resource claim to be the only or best way to do something?
  5. Is the writer hypervigilent in any way? Are they constructive in their observations? Do they demonize or humiliate anyone while trying to educate? If they are negative, are they clear it is coming based on their own personal experience? Do they recognize any shortcomings?

**I have not been asked nor have I been compensated for adding any of these resources to this list. I am also not endorsing one resource over another

**This list is not exhaustive! Feel free to contact me with some of your favorites. I am always looking to add to my collection

HELPFUL BOOKS

WHAT ITS LIKE (Autism related)

Neurotribes: The Legacy of Autism and the Future of Neurodiversity (2015) by Steve Silberman

The Loving Push: How Parents and Professionals Can Help Spectrum Kids Become Successful Adults (2015) By Temple Grandin

Schuyler’s Monster: A Father’s Journey with His Wordless Daughter (2009) By Robert Rummel-Hudson (Schuyler is not autistic, but has apraxia of speech)

Carly’s Voice: Breaking Through Autism (2012) By Arthur and Carly Fleischmann

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism (2016) By Naioki Higashida

Fall Down 7 Times Get Up 8: A Young Man’s Voice From the Silence of Autism (2017) By Naioki Higashida

Look Me in the Eye: My Life with Asperger’s  (2008) By John Elder Robison

Ketchup is My Favorite Vegetable: A Family Grows Up with Autism (2015) By Liane Kupferberg Carter and Susan Senator

Thinking in Pictures (1995) By Temple Grandin

The Way I See It (2008) By Temple Grandin

Born On A Blue Day  (2006) By Daniel Tammet

The Horse Boy (2009) By Rupert Isaacson

Chicken Soup for the Soul: Raising Kinds on the Spectrum  (2013)

Aching Joy (2018) By Jason Hague

What We Love Most About Life: Answers from 150 Children Across the Autism Spectrum (2016) Complied by Chris Bonnello

This Is Asperger’s Syndrome (1999) By Brenda Smith Myles and Elisa Gagnon

What About Me? A Book By and For an Autism Sibling (2017) By Brennan and Mandy Farmer Illustrated by Emily Neff

ADDRESSING SENSORY/REGULATION

The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction(1998) By Carol Stock Kranowitz

The Out-Of-Sync Child Has Fun (2003)

Disconnected Kids (2009) By Robert Melillo

Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (2006) By Lucy Jane Miller

Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Integration Issues(2005) By Lindsey Biel and Nancy Peske

Interoception: The Eighth Sensory System (2015) By Kelly Mahler

Food Chaining (2007) By Cheri Fraker, Mark Fishbein, Sibyl Cox, Laura Walbert

The Incredible 5 Point Scale (2003) By Kari Dunn Buron and Mitzi Curtis

Exploring Feelings: Cognitive Behaviour Therapy to Manage Anxiety (2004) By Tony Attwood

The Explosive Child  (2001) By Ross W. Greene

From Chaos To Calm ( 2001) By Janet E. Heininger and Sharon Weiss

Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns (2005)By Brenda Myles, Jack Southwick

Zones of Regulation: A curriculum designed to foster self-regulation and Emotional Control (2011) By Leah Kuypers

The Relaxation and Stress Reduction Workbook For Kids(2009) By Lawrence E. Shapiro and Robin Sprague

ADDRESSING SOCIAL DIFFERENCES

Thinking About You Thinking About Me: Teaching Perspective Taking and Social Thinking to Persons with Social Cognitive Learning Challanges, 2nd ed. (2007) Michelle Garcia Winner

The New Social Story Book 2000 by Carol Gray

The Hidden Curriculum: For Understanding Unstated Rules in Social Situations for Adolescents and Young Adults (2013) by Brenda Smith Myles, Melissa L. Trautman, Ronda Schelvan

Navigating the Social World: A Curriculum for Individuals with Asperger’s Syndrome, High Functioing Autism and Related Disorders (2002) by Jeanette McAfee

Skillstreaming the Elementary School Child: New Strategies and Perspectives for Teaching Prosocial Skills (1997) By Ellen McGuinnis and Arnold Goldstein

ADDRESSING BEHAVIORS/LEARNING

ABA (Applied Behavior Analysis) : Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals (1996) Edited By Catherine Maurice, Gina Green and Stephen Luce

PEAK Relational Training System (2014-2018)   By Mark Dixon

Bringing ABA to Home, School and Play (2012) By Pam Leach

VBA (Verbal Behavior Approach): The Verbal Behavior Appoach: How to Teach Children with Autism and Related Disorders (2007) By Mary Lynch Barbera

Floortime Approach/Greenspan Approach: The Child with Special Needs: Encouraging Intellectual and Emotional Growth (1998) By Stanley Greenspan, Serena Wieder

The Challenging Child: Understanding, Raising and Enjoying the Five “Difficult” Types of Children (1995) By Stanley Greenspan

Addressing the Challenging Behavior of CHildren with HIgh Functioning Autism/Asperger Syndrome in the Classroom: A Guide for Teachers and Parents (2002) By RebeccaMoyes

How to Teach Life Skills to Kids with Autism of Asperger’s (2010) By Jennifer McIlwee Myers

Taking Care of Myself: A Healthy Hygiene, Puberty and Personal Curriculum for Young People with Autism (2003) By Mary Wrobel

The Sixth Sense II (2002) By Carol Gray

Simple Strategies That Work:Helpful Hints for Educators (2006) By Brenda Smith Myles, Diane Adreon and Dena Gitlitz

ADDRESSING EXECUTIVE FUNCTIONING

Late, Lost and Unprepared (2008) By Joyce Cooper-Kahn and Laurie Dietzel

Taking Charge of ADHD (2005) By Russell Barkley

The ADHD Book of Lists (2003) By Sandra Rief

How to Reach and Teach ADD/ADHD Children (1995) By Sandra Rief

You Mean I’m Not Lazy, Stupid or Crazy?!  (1993) By Kate Kelly and Peggy Ramundo

Driven To Distraction (1994) By Edward Hallowell and John Ratey

Organizing the Disorganized Child (2009) By Martin Kutscher and Marcella Moran

HELPING/ADVOCACY/COPING

Ordinary Families, Special Children: A Systems Approach to Childhood Disability 3rd Ed (2007) By Milton Seligman and Rosalyn Benjamin Darling

From Emotions to Advocacy 14th Ed (2011) By Pete and Pam Wright

All About IEPs: Answers to Frequently Asked Questions About IEPs (2011) By Peter Wright

The Complete Guide to Autism Healthcare  (2017) By Anita Lesko

Ethics for Behavior Analysts (2011) By Jon Bailey and Mary Burch

The Five Things We Cannot Change (2005) By David Richo

Getting to Yes: Negotiating Agreement Without Giving In (1981) By Roger Fisher and William Ury

The Only Negotiating Guide You’ll Ever Need (2003) By Peter B. Stark and Jane Flaherty

YOU TUBE CHANNELS

Admittedly, this is a newer realm for me!  Contact me to add resources

Running Through Water

Special Books By Special Kids

PEAK Relational Training

TED Talks

OCALI (Ohio Center for Autism and Low Incidence

Autistic Not Weird

Kerry Magro

BLOGS/SOCIAL MEDIA I LIKE

Check out my link here. This list is always growing and changing!

HELPFUL WEBSITES

Education/Learning/Advocacy

Understood

Wrightslaw

Ohio Center for Autism and Low Incidence

Autism Internet Modules

The US Department of Education

IDEA (Individuals with Disabilities Education Act) Full PDF Text

IDEA State Contacts

Disability Advocacy and General Info

The ARC

Disability Scoop

Autism Society of America

Respect Ability

Autism Awareness Month. Day 3 2015. C is for Coping

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Day 3

In the most typical of situations sibling issues exist. For sibs of those with significant impairment, these kids are often the invisible bystanders. Their issues and needs sometimes take backseat to the immediacy and reality of their sibling with Autism needs. We ask them to deal with leaving fun events earlier than they would like, let embarrassing situations roll off their backs and stifle disappointment. The rate of having more than one child with neuro diversity is high. Sometimes, the less impaired child is asked to cope and step up in ways that would challenge even the most typical and mature of children.

Day 1. A is for Aides

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Autism Awareness Month A-Z 2015
A is for Aides

Running through Water

Day 1

A is for Aides.

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A1 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young…and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.

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Why I’m OK with Kids BOO-ing Mine This Halloween

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In U.S. suburbia at Halloween, if you are lucky enough, you get “BOO-ed”.

It is much nicer than it sounds.

Getting BOO-ed means opening your front door to find treats placed anonymously on your doorstep. You…I mean, your child… are to return the favor by BOO-ing another neighbor and so on and so forth. When we moved to our neighborhood 12 years ago, A1 and A2 were a toddler and infant respectively. Our development was full of mature trees, which also meant a neighborhood full of empty nesters. By the time the neighborhood turned over, my kids were much older than the new generation running the streets with strollers and trikes. A2 will watch what he calls “the babies” out our front window. The mothers are young and pretty even in their haze of exhaustion playing in the cul-de-sac and chasing down their little runners. I can relate to their frenzied outdoor fun since even with a 12 year-old, I too cannot just let my child out into the streets without supervision. Autism is an uncomfortable reality for the middle schoolers who in the neighborhood who don’t want me around.

But really, those little kids are functioning in their play where A2 is cognitively and they are at the age of humanness where they are accepting of his differences. For them, the differences are not about intellectual impairment, but rather size impairments as they watch A2 attempt to squeeze himself unsuccessfully into their Cozy Coups. Their questions are genuine and kind and they think nothing of him joining in the digging of dirt.

But most days, he will not join them in play. He knows those are the babies. He knows he is not. This often means I am benched from the cul-de-sac-exhausted-mommy-brigade that stokes glimmers of socialization and connection I had with other mothers when I was also young, pretty and still had energy.

Today, as he is every year since our street started filling up with little ones, A2 was BOO-ed. Twice.

Care packages are silently left at our door and I wonder which of our neighbors were sure to include him. Most know he doesn’t eat many solid foods, knows he might not notice something on our doorstep or spend much time with a special gift. I think despite my smiling isolation, I have neighbors who understand that being BOO-ed is about inclusion and is as much for me as it is for A2. And there is never anything spooky about that.

#autism #autismawareness #kindness #goodneighbors #halloween

Day 4. D is for Details

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Day 4

In grad school I learned this neat little thing called a ecomap…and then saw another mom post a personal one in a blog. A year ago, I decided to make one for the kids (for sake of privacy, a fourth of this map is not shown) For us, that means 37 total IEP objectives and 19 ISP service areas to track, 44 providers, 12 clinics and 6 agencies we are in regular contact. All before work and caregiving. When you meet a parent of a child with special needs–and if you run into them somewhere and they don’t seem to recognize you….or you already know one who seems extra high strung or flighty or snarky….well….cut them a little slack. Not everyone is built to keep this much in their head all the time.

B is for Boredom: 2015 Autism Awareness Month

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Day 2

While A2 is the most fun loving, joyous person you will ever meet and lovess to be on the go–like many children with Autism he struggles with extreme boredom since he requires adult intervention to choose, initiate and maintain activities. His explicit expression of wanting to play with other kids is emerging but often it leaves him alone knocking on the back door window as he watches children playing unsupervised across the street.