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:

Is there any research behind a method? If not, are they pretty clear about that?
Does the resource have any input from someone with a disability/caregiver?
Does the “helping” resource ensure the individual’s dignity while still helpful?
Does the resource claim to be the only or best way to do something?
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