Words matter.

As a parent of a child on the autism spectrum, words matter the most.

That’s why this year in April there has been a shift in how we can advocate for better representation, understanding, and acceptance of the autistic community and their families. Previously April has been known to be Autism “Awareness” Month where the primary focus was empowering people with autism and their families. Well, in 2021 the autism community is calling on all of us to be better and shifting from awareness to acceptance.

April is now known as Autism Acceptance Month.

This change aims to emphasize the need for the public to fully accept, integrate, and include those with autism. It’s about making life accessible for all persons via education, employment, housing, healthcare, and services. Unfortunately there are a number of systemic barriers to the autistic community and this month simply highlights the areas of need and ways people like you and me can begin to alter the perception of autism.

As a parent raising a child with autism spectrum disorder (ASD) it’s been an ongoing lesson in adaptive parenting and proper advocacy. A big part of that is our own education and seeking new ways to be better in how we help our son but also in how we share about him to others. It’s ever-changing and therefore I’m happy to share what I know, what I’ve learned, and ways to easily support this mission of greater acceptance and opportunity.

Neurodiversity and what that means

This year you’ll probably be seeing or hearing this word a lot: neurodiversity.

It’s a word that means a great deal to parents like us because it represents the inclusivity we so much desire for our children. It represents the diversity that exists within the autism spectrum and that it isn’t linear or easily definable. You may also notice that along with neurodiversity, the symbol for autism acceptance is shifting from the puzzle piece to a rainbow infinity symbol. It’s important we all begin using this new symbol and get comfortable with talking about neurodiversity as the new normal.

What to remember about autism

To help foster nerodiversity and advocate for better understanding, here are a few easy things to know and remember about Greyson and others with autism:

• Autism and ASD is not a linear spectrum with more or less severity. Everyone’s autism affects them and their families differently.
• Stop using “high/low functioning” as labels. I’ve learned this year that it’s harmful and misleading.
• Autism is not something someone needs to be “cured” of or will “outgrow”, rather it’s a part of who a person is (i.e. their neuro-biology) and therefore needs to be accepted among our greater society.
• Stimming (or repetitive movement or noises) is a natural way for autistic children to self-soothe and cope with overwhelming situations. Their stim is just a way for them to express their emotions.
• Not all people with autism stim.
• A person’s ability isn’t determined by whether they can speak or not.
• Just because they don’t give you eye contact doesn’t mean they’re not listening to you. So, please be mindful of what you say – especially if you’re talking about that person around them.

Easy ways you can be better this month

• First, just try to educate yourself about autism – it’s not our responsibility (i.e. parents or the autism community) to teach you everything.
• Be inclusive of all people despite their outward behavior (i.e. social awkwardness, eye contact, stimming, etc.)
• Refrain from staring or having obvious whispers to your friends/spouse when you see a family with an autistic child or when that child is having a meltdown. As parents, we see you and it’s hurtful.
• Have open discussions with your own children about autism acceptance and teach them how to be more inclusive (at school, on a sports team, on the playground, etc.).

It’s on all of us to help change public perceptions of autism and in these seemingly small ways lend themselves to the larger issue. I couldn’t encourage you more, not just for my son but the many others out there, to simply be inclusive in all the ways you can. Teach it, live it, and hopefully within my son’s lifetime there will be greater understanding and acceptance.

You can read our personal stories about life with Greyson below:

• Raising a Child on the Autism Spectrum
• That Moment You Realize Your Child May Have Autism

In October of 2019 we had our three year old evaluated and eventually diagnosed with Autism Spectrum Disorder. It was one of the most challenging years in my experience as a mom because it hit me in a multitude of ways. The “threes” are known to be a tough age and we had our fair shake of outbursts and tantrums, not knowing how to discipline him, reach him, or even understand him. It stretched us as a family and when all hope was seemingly lost, his diagnosis became a source of support and a gateway to understanding what his needs are.

…it’s not about the diagnosis, it’s about having an understanding of what’s going on with your child. 

Leslie Hayden (pediatric physical therapist & mother of a child on the spectrum)

Further Reading: A Story of Raising and Working with Children with Autism

Looking back on that early year since his diagnosis I am so proud of Greyson’s hard work that has made his progress so tangible and rewarding. He continues to make strides and my heart leaps when I see him beginning to connect the dots on his own.

Today I’m sharing not only a look back, but a reflection on where we are today and the exciting future this year holds for us as a family.

Early Intervention

One of the biggest reasons, in my opinion, Greyson has had the opportunity to make the progress he has is due to early intervention. For any parent with a child with a neurological disorder like ASD, early intervention is key. Once we embarked on the journey of having him evaluated we began to follow the breadcrumbs that eventually lead us to the people and organizations who could help him (and us as his parents) navigate these new and uncharted waters.

Our Early Steps:

• discussions with our pediatrician lead us to his behavior either being caused by ADHD or ASD.
• we had him evaluated by our local school district’s Special Education Department where they recommended him as having Autism Spectrum Disorder (ASD). (Note: school districts do not provide medical evaluations).
• from there we established an IEP (Individualized Education Plan) and enrolled him in a public SpEd preschool near our home where he would learn in a specialized environment and begin receiving speech and OT services – as outlined in his IEP.
• we then had him medically evaluated by a child psychologist for ASD so we could begin looking for services such as ABA (which requires a medical diagnosis). She came back having evaluated him having high intelligence and therefore on the high functioning end of the Autism Spectrum.
• we took this medical diagnosis and submitted it for services for ABA therapy in our home.

* Covid did impact the types of services we could receive. In-home sessions were the only option whereas ABA typically provides the options for in-home, at-school, and in-facility therapy sessions with other children.

These steps were emotional ones to take and often had us yo-yoing our feelings about Greyson. My husband and I had bouts of frustration, guilt, sadness, and anger over what it meant for our son to be on the spectrum. I also went through these motions of guilt, frustration, and hope. However, the steps we took allowed us to process all of these emotions with the help and support of professionals as well as friendly interactions with fellow parents who have experienced something similar.

Where we are a year later

Greyson absolutely loved his new preschool where he attended and as his parents we were excited to see him so engaged again. School had been a source of anxiety for us the previous year – as every preschool we tried always gave us the same feedback: that Grey was struggling to fit in and that it may not be a good fit due to his behavior. It was reassuring that he was being accepted and learning alongside his peers who were were facing similar learning and social challenges.

2020 and beyond

Then, 2020 happened. Covid hit and he was sent home along with every child across the nation to continue on a virtual learning platform.

I adore his teaching team for the efforts they continually put in for him and his classmates because virtual learning is hard – especially for kids with special needs. Although it was difficult to balance this new normal, Grey continued to do his best. It was a struggle some days whereas others he was happy to participate. We decided that since he wasn’t receiving his speech and OT services through the school we would push forward with ABA therapy in our home.

Applied Behavioral Analysis (ABA)

Behavior analysis is a scientifically validated approach to understanding behavior and how it is affected by the environment.

Autism Speaks

ABA has had one of the biggest impacts on Greyson (and us!) within his first year since being diagnosed because everyday he worked with a therapist who focused on a variety of behavioral and life skill goals. With our newfound time at home (thanks, Covid) he was able to receive 2 hours of services every day where he worked on things like: eye contact, accepting no, developing self-regulation skills, and more. Furthermore, us parents received some training to help us best meet his needs as well as support and apply what he was learning during his therapy sessions.

Through ABA we, along with Greyson, learned more about the cause (antecedent) of his tantrums and how to best respond (consequences). We learned about what triggers him, how to get ahead of those triggers, and what to do as a response if he’s already triggered. Such mind-blowing stuff! We also learned the importance of following through on our consequences, even if it causes a slight inconvenience to us.

Another helpful nugget of information we received was understanding his functions of behavior.

Functions of Behavior

• sensory: provides stimulation input to the brain
• escape: removes unpreferred activities, people, interactions or situations
• attention: provides access or awareness to/away from people or interactions
• tangible: provides access to preferred person/people or items

Just this alone has helped us understand the cause of some of Greyson’s behavior (good or bad) and be able to best meet his need in that moment (or have a consequence that best matches the function).

Punishment vs Consequence

function (cause) + behavior (outward action) = consequence (the model to teach proper behavior)

We also learned that punishments don’t help teach a child about proper behavior. Discipline should be a learning process with meaningful actions that help a child understand their behavior and guide them to making better choices when faced with a similar trigger. Consequences on the other hand do just that – they teach – and are followed up with a short discussion about what happened, why, and what should happen next time.

Greyson’s tantrums and outburst have all but disappeared (with an occasional drop to the floor crying bit), which tells me some of what we’re implementing is working.

Greyson’s Gains

Although Covid was a huge setback for Grey, he adapted as best he could under these new circumstances. With that being said, some of the gains we’ve really taken notice of this last year have been:

Social

• better eye contact when interacting with others
• a desire to play and communicate with others – especially kids
• a MAJOR improvement in his speech and ability to communicate in complete sentences
• others can begin to understand him
• learning to use his words when frustrated by interactions with other kids (i.e. sharing toys, imaginative play, etc.)

Behavioral

• self-regulation (i.e. identifying emotions, appropriate responses…)
• he’s now telling us he “needs a minute” or “I need a break” when something becomes overwhelming for him and goes to another room to calm down!
• his ability to transition from one activity to the next (with the use of timers and a heads up about the transition)
• learning to use his words to communicate when he’s sad, angry, or frustrated

Life Skills

• can dress himself with little to no assistance (buttoning, zippering, etc.)
• washing his hands, brushing his teeth, potty routines, etc. and understanding why hygiene is necessary
• learning his address and our cell phone numbers

Safety

• walking with us and not running ahead (impulse control)
• continuing to learn appropriate personal space with others
• asking permission to open the door
• we were beginning social circles to help teach Greyson about social boundaries and relationships

Our Gains as Parents

Greyson isn’t the only one with goals and measurable progress. As his parents we strive to do our best to learn alongside him and do what we can to meet him where he needs us. As he matures and those needs change, we’ve been equipped to best meet them – knowing there’s still so much to learn.

Here are a few ways we’ve made gains (and continuously work on…) this last year:

• always learning and being open to new approaches to parenting
• communicating as spouses about the days’ struggles with Grey
• learning to tag-team as parents as a means of our own self-regulation
• communicating with Grey about our feelings (i.e. being honest about feeling sad, frustrated, or even happy) – we don’t need to pretend we’re happy all the time!
• providing ourselves with extra time for transitions
• awareness of what could be potential triggers for Grey in public settings and having a game-plan for when plans change spontaneously

…and here’s to another great year ahead of us!

Are you a parent or teacher of a child(ren) with ASD? What have you found to be the most helpful in your journey?