Talking about an ASD Diagnosis

Following a recent Good Friend Peer Sensitivity Workshop, an observer remarked how she had seen similar presentations about autism, but the presenter never actually used the word "autism".  I thought that was much like talking about reproduction without mentioning the sex organs: not very helpful, and one leaves with more questions than useful information.  I believe parents of children with autism spectrum disorder (ASD) should approach "the talk" about autism in much the same way they would "the talk" about those reproductive and sexuality issues.  You don't divulge every detail at once, but continually reveal and unpack details as they become relevant.

Though this quotation is often attributed to Albert Einstein,
there is no evidence that's accurate. So let this say
what it will to you in light of this discussion topic.

For example, a 4-year-old with autism might be receiving some sort of therapy as an intervention for related symptoms.  It's okay to let your child know that the lady he sees at school helps him with making words.  A 10-year-old on the spectrum might be struggling with the dance unit in Phy Ed.  It's a great idea to explain that sometimes gross motor coordination (moving big muscle groups) is difficult for her, but she's amazing at memorizing details -- and both are tied to the way her brain is wired.

Because by the time a 13-year-old with ASD is contemplating suicide because he doesn't understand why he's so different and/or being bullied by his peers, you've missed some crucial opportunities to foster self-awareness.

Of course, not all adolescents with ASD will despair of their lives. In fact, the majority will not. However, a study published by Penn State College of Medicine's Angela Gorman, Assistant Professor of Child Psychiatry, and researchers, as reported by Science Daily (March 13, 2013), sets off some important warnings:

The researchers found that the percentage of children with autism rated by their parents as sometimes to very often contemplating or attempting suicide was 28 times greater than that of typical children, though three times less than that of depressed non-autistic children. The four demographic variables [Black or Hispanic, 10 years old or older, socioeconomic status and male] were significant risk factors, as well. 

"That was probably the most important piece of the study," said Gorman. "If you fell into any of those categories and were rated to be autistic by a parent, the more categories you were a part of increased your chances for experiencing suicidal ideation or attempts."

The study also notes that children with ASD who were teased or bullied were more likely to consider or attempt suicide.  An essay in this month's Good Housekeeping magazine by Jackie Mercurio is a painful vignette of that reality.

If you've been following any of the #IMFAR2014 chatter, you might have gleaned that Marsha Mailick, director of the Waisman Center (Madison, Wis.), spoke in her keynote address at the International Society for Autism Research Conference about parent positivity as a powerful determinant of quality of life for adults with ASD, per her research.

What does all this mean for you as a parent?  In my opinion, your child has the right to know about his or her autism.  But I encourage you to keep some things in mind when you decide to have "the talk":

• Your child will take cues about how to feel about autism from you.  If you're not okay with it, don't expect him/her to be, either.
• Keep your side of the conversation hopeful, positive, and accepting.  As you explain a struggle connected to autism, be sure to remind about a strength, too.
• Validate your child's feelings.  Unless you have autism, too, you don't really know what it's like to live with autism in your body.  Don't minimize what your child is experiencing, whether physically or emotionally.  
• This is an ongoing conversation.  Look for opportunities to add depth, connection, and meaning to the foundation you lay.  Maybe read Jennifer Elder's Different Like Me or listen to The Figureheads' "We ALL Fit" or visit Carly Fleischmann's Café.
• You have LOTS to learn from your child with autism, too!  Often times, the one who needs perspective-taking is the one who does NOT have autism.  We each assume others' sensory experiences and social preferences are similar to our own.  That can be dangerous.
• Look for ways to help your child find his or her "tribe".  It's about the coolest thing ever to observe the interactions between people of similar neurology and realize they have a profound culture all their own.  Encouraging inclusion doesn't mean that you remove your child's autistic manifestations to "fit into" a world created by the majority neurology.  It means you recognize those manifestations of autism and consider them across environments, encouraging systemic changes that will foster meaningful participation.

I recognize that telling your child about his or her autism is your right as a parent.  Please -- consider your child's right to self-awareness and the importance of self-advocacy as you decide what information to sequester.

And let's learn from each other!  For those with autism, do you remember being specifically told you had been diagnosed with ASD?  For parents, do you have some encouraging remarks about your experience with your child on the spectrum learning about his/her neurology?  For educators and administrators, how have you seen self-awareness benefit your students with ASD?

What comes after Awareness?

It's a busy month in the Good Friend calendar: Autism Awareness Month.  We caregivers are all bustling about with blue in our 'dos and shining our lights and wearing our puzzle piece pins.  And as my own children with ASD get older (they're now 14 and 11), they're taking more notice of all the buzz.  As they take more notice and I explain in more depth, it all adds to their self-awareness.  So in our household, Autism Awareness Month really is a triple threat (and I mean that in a benign way): It's important to me as a mom, to our organization's work, and to my kids as people with ASD.

One of the tweets I (follow ChelseaMB) posted on World Autism Awareness Day was met with the following question: "after aware, then what?" [sic].  For me, the reply took far fewer than 140 characters and was instant:  Just what #GoodFriendInc stands for: ACCEPTANCE and EMPATHY!  I didn't need to ponder that.  It's what I've been focused on through Good Friend for the last five years, and even longer as a mom.

Good Friend's philosophy is that you can't explain what you can't name, so Awareness is step one.  That's what makes Autism Awareness Month so foundational.  But it cannot stop there.  Once we are aware, we work toward understanding.  Understanding leads to Acceptance.  That's step two.  When we move into understanding autism on an experiential level, we foster Empathy.  This is the step where the magic happens.  Once we've felt what it might be like for our friends with autism, we can become natural supports for them.  We will remember what we've learned when we see our friend or colleague with autism struggling, and will respond in a constructive -- versus judgmental -- way.

Constructive responses lead to successful interactions.  And more than anything else, success begets success.

So while I realize that blue for autism in April won't create autism-friendly jobs in May, it certainly does create opportunities for discussions!  Seize those opportunities to discuss with your students, your co-workers, and your community members.  Create awareness of the strengths of individuals with ASD.  Create awareness of the resources in your community, or discuss what's lacking and call the stakeholders to the collaborative table to figure out how it can be manifested.  Self-advocates: Improve self-awareness of your talents and capitalize on them.  Become aware of what supports might be there for you and put those tools in your toolbox.

Awareness is the foundation; keep building!

Sowing the seeds of self-determination

There's this word in the Special Education universe that's often misunderstood until, as a parent, you and your child are in the thick of it: Transition.  It's not the lowercase transition, which occurs so many times in the life of a student with special needs.  There's the transition from an Individual Family Service Plan (IFSP) that preschoolers have from birth to age 3, if they qualify, to the Individualized Education Program (IEP) that the local school district drafts.  Then the transition from Early Childhood classes to Kindergarten.  Then from elementary school to middle school.

And somewhere along that middle school time in the state of Wisconsin, or in high school according to federal law, families start to hear about this Transition.  Transition is the period of time and series of events required to prepare students with special education needs for life after secondary education.  While students with IEPs may graduate with their peers, they may also opt to stay in the public school system, receiving related services until they're 21 years old.  This Transition planning is multi-faceted and critically important.  Perhaps most importantly, it's a time when students are required to engage actively in the process and select desired outcomes.

The Wisconsin Department of Public Instruction has a series of four publications intended to assist Transition teams with various aspects of the process.  There is one that speaks to the steps families and schools can take when students are yet in elementary school: Opening Doors to Self-Determination Skills.  Here's the list for students (found on p. 7 of the booklet):

• Know your strengths (what you are good at).
• Know your areas of need (where you need help).
• Know your interests (what you like).
• Know what kind of support you need to be successful.
• Learn how to make choices.
• Be a part of Individualized Education Plan (IEP) meetings, at first by introducing IEP members and describing yourself (interests, likes, dislikes).
• Share a list of accommodations you need with general education teachers.
• Participate in clubs, sports, and other activities kids your age are in.
• Begin to understand your own disability and what it means to your learning.
• Choose a time and place to study and do homework at home each day.
• Help out with family chores (making dinner, shopping, cleaning your room).
• Volunteer and help out in your local community.
• Enjoy who you are! Learn about yourself. You are more than your disability.

How can students with autism be self-aware if we don't start having these conversations with them early?  The better they are at being familiar with themselves, the better they will be able to determine their own needs.  Knowing their strengths and their supports is part of self-determination.  And being able to share those things with peers, teachers, and eventually employers, will make that Transition more smooth.


So as a parent and professional, I encourage you as parents and teachers to be Transition-minded with your students when they are in second grade.  And by the time your student with autism is in middle school, they will be far more likely to participate meaningfully in this mandated process.

Self-Advocacy: The Right Stuff

One of the more remarkable things about my (almost) 11-year-old daughter is how well she knows herself.  In fact, there are things she tells me about the way her brain works that astonish me, and give me keen insight into why other children with autism spectrum disorder might respond in certain ways to environmental stimuli.  For example, I opted to flat-out ask her a couple of years ago what was going on in her brain and/or body when she flaps her hands.  This behavior (sometimes called a "stim" or "self-regulating"), which we as parents first observed when she was approximately 10 months old, accompanied anything from watching bubbles being blown to water splashing in her toddlerhood, lining up plastic toys in early childhood, and drawing as an elementary school-aged student.

"I'm using my imagination," was my daughter's response to the query.  And the expression on her face was one of disappointed shock, as if to punctuate with a "Duh!".  I dove deeper into her account.  She explained that lining up her Barbies while they were all facing her allowed her to retreat into a creative process where the dolls could move and talk instead of having to be manipulated.  And there was a lively setting rich with sounds and smells and experiences.  There was no way to create all that physically; but in her mind, it was all happening.  And it was wonderful.

Her knowledge of her self is the beginning of self-advocacy.  Because knowing how her brain works well (or not), and knowing how that compares to other students, can be used to craft learning environments and teaching methods into something functional for her.  She knows that too much noise (students shuffling papers, talking amongst themselves, etc.) makes it impossible for her to process thoughts.  So when she's feeling overwhelmed, she's learning to make some assessments about her environment and ask for an alternate workspace if needed.

Not all children with ASD are as adept at communicating their unique needs (and neither was my daughter, frankly).  But it's never too early to begin to get them to recognize signs of stress in their bodies and help them and their education/care team identify alternative activities or adapted experiences to maximize success.

Using a common language is important, so the student can express him-/herself in a way everyone can understand and respond to appropriately and in a timely fashion.  If a child is unable to evoke the desired response, he/she is unlikely to continue attempting to use budding self-advocacy skills.

Good Friend's videos can help families and educational teams establish a common language.  Using the vocabulary and principles in the elementary and secondary version of our films can be a starting point for self-awareness.

The better a student understands him-/herself, the less dependent he/she will be on the care team to recognize signs of distress and the more likely a successful outcome will result from an inclusive atmosphere.  This will be especially important at the beginning of the school year, when the new educational team will not know the student very well and will be responsible for getting to know a classroom full of learners.

photo by Royce Bair

Students with "the right stuff" (as it pertains to self-awareness and advocacy) will have a better sense of control when the unpredictability of September crashes on them like a breaking wave.  Their feet will be properly positioned to withstand the rushing waters.  Here's to a summer of preparing those balancing skills!