Navigating The Autism Diagnosis

· ·

I recently had the privilege of talking to Amber Arrington. She’s the mother to 6 children, 3 of whom are autistic. She started Autism Savvy to support other parents whose children were recently diagnosed or awaiting a diagnosis. I loved hearing Amber’s story and her insights when it comes to navigating a new autism diagnosis. Whether you are a parent or an educator you’ll want to read my conversation with her!

Navigating the Autism Diagnosis

Tara: “Can you tell everyone a little bit about yourself?”

Amber: “My name is Amber Arrington, and I am a mother to six children ranging from three to 20 years old. Three of my children are autistic.”

Tara: “Six kids! That’s a lot, Amber.”

Amber: “It does sound like a lot, but it feels like I had two families because of the age gaps. My older kids are between 16 and 20, and then my younger ones are three and five. So, it’s like having two sets of kids. It’s a unique experience raising teenagers alongside toddlers.”

Tara: “What’s it been like being a mother to three autistic children?”

Amber: “Our journey to building our family was challenging. My first four kids were adopted, and our younger two were conceived through IVF after 20 years of marriage. Tyson, our oldest, was diagnosed at 12, while our daughters, Mallory and Kennedy, were diagnosed at 27 months and 19 months, respectively. Each diagnosis brought its own set of challenges and emotions. I felt differently when each one of them received their diagnosis because the circumstances were different for each one. “

Indicators of an Autism Diagnosis

Tara: “Do you feel like because of your son you were more tuned into some of the indicators of autism?”

Amber: “Honestly, no. When my son was diagnosed with autism, I still didn’t even know anything about autism and, it was so different that it was hard to identify. He was diagnosed with ADHD first, I guess back then they wouldn’t even diagnose you with both. They didn’t know that they could be comorbid conditions, ADHD and autism.

So when the little ones were diagnosed, I was blindsided. It’d been 11 years since I had a baby and I forgot. I expected them to meet their milestones and I wasn’t paying attention to what was being missed and what they relate to.”

Tara: “What were the initial signs you noticed with your daughters?”

Amber: “Mallory turned one in January of 2020 and I became pregnant again with my next baby. Then in March we have Covid hit and everywhere is shut down. So between one and two we’re just pretty much locked in our house, not going anywhere. Not going to parks, not going to grocery stores. And I am just missing it. She seemed to be progressing. But looking back I realized she started to regress. She wasn’t pointing, she wasn’t clapping, she wasn’t waving, she wasn’t saying mom and dad, she wasn’t starting to build sentences.

Once she hit closer to 18 months to two years, she was hand-leading. She was scripting and I just thought she was brilliant because by age two she could count to 10. She knew her letters, numbers, shapes, and colors. I was like, this kid’s brilliant! She could say a word, she could label things, but I just was missing it.

Kennedy, on the other hand, was meeting her milestones. I ended up with her being diagnosed when I was trying to get her in as a typically developing peer model at Mallory’s ABA-based preschool. Some subtle things started to happen like toe walking and then her eye contact started to diminish a bit and not interacting as she played. Those were the only things I could highlight as to what was going on with her when she was diagnosed at 19 months.”

Tara: “Wow. So at 19 months, who suggested she be tested?”

Amber: “It was because Mallory was already going to this preschool where they had half typically developing peer models and half autistic kids. I had wanted to put Kennedy in as a peer role model and wanted them to be together. But as such they do an assessment. So I brought her to be assessed. I didn’t even understand that I was walking into an ADOS autism evaluation as the assessment.

So through the ADOS, she wanted to leave halfway through it. She wasn’t as engaging with the practitioner who was giving the ADOS assessment and those types of things. At the end of the assessment they said she scored at moderate risk for autism and thought we should have her evaluated.

I was shocked! Her signs were so subtle. Even the pediatrician three weeks said they weren’t worried about her. She was talking better than my two-year-old at 18 months. It was a weird situation.”

Tara: “So is there anything that you’ve struggled with? I think all of us as parents struggle in many areas, but was there anything you struggled with as a mom of three autistic children?”

Amber: “What I struggled with was the question ‘Am I doing the right thing?’ and ‘Am I doing enough?’ Especially when it comes to raising three autistic kiddos. Because when you’re handed an autism diagnosis, at least for me, I left the psychologist’s office with a packet of ABA providers and that was it. No other information, no understanding of autism.”

Talking to Parents About Autism For the First Time

Tara: “How can professionals support parents navigating an autism diagnosis?”

Amber: “It’s crucial for professionals to approach the topic with empathy and optimism. Autism isn’t a tragedy; it’s just a different way of experiencing the world. By providing resources and guidance with a positive outlook, professionals can help parents feel empowered rather than overwhelmed. Focus on the child’s strengths and abilities while providing support where needed. Parents appreciate professionals who understand their journey and offer practical advice tailored to their child’s needs.”

Tara: “What advice would you have for special educators, SLPs, like myself or other therapists when it comes to talking to parents about autism?”

Amber: “It can be a very touchy subject to talk to a parent about autism. Particularly if you’re in the position where you suspect it as their therapist and the parent is not wise to the idea.

The reason it is tricky is because of what the narrative has been. I think as long as they are willing and open to learning new things about autism as a whole they’ll realize that autism isn’t a scary, sad thing. There’s so much we can do. There is hope. It’s not sad, it’s not a death sentence, it’s not an emergency. Autistic people can live happy lives. Your life is not over if your child is autistic.

If we’re coming at it from that perspective, then it won’t be so scary to parents and they won’t be so afraid to talk to parents about it.”

Tara: “Sometimes parents still need to go through a process of grief, maybe just like anyone would if they were talking about any disability or any way that their child may be different. But moving on from that, as a parent, that’s kind of something you have to do on your own.

For us as educators, and SLPs, we wanna stay positive and keep showing all of the strengths of the child. We’ve talked a lot recently about deficit-based versus strength-based IEPs. As much as we can show them the strengths that sometimes are there because of the child’s autism, that can be helpful to parents.

Can you tell us about your recent book, “Not a Typical Motherhood: A Guide for Navigating a Child’s New Autism Diagnosis“?”

Amber: “This book is a comprehensive guide for parents who have just received an autism diagnosis for their child. It covers everything from understanding the diagnosis to accessing services and supporting the child’s development. It’s the resource I wish I had when my journey began.”

Tara: “Lastly, tell us about the Autism Savvy Summit and your Infinity Mom Club membership.”

Amber: “The Autism Savvy Summit is designed to support families stuck on waitlists for an autism diagnosis or services. It provides access to experts and resources to help families during the waiting period. The Infinity Mom Club offers ongoing support and guidance for mothers navigating the challenges of raising autistic children.”

Autism Diagnosis Criteria: DSM 5

When autism is diagnosed, professionals use the criteria from the DSM-5-TR. It is the “diagnostic statistical manual” and it lists the current criteria for an autism diagnosis. It lists the things that might show someone has ASD.

To figure out if a child is autistic, according to the DSM-5-TR, professionals focus on two main areas: how they communicate and their repetitive behaviors or interests. The child needs to show differences in both areas, and these should have started when they were little, even if they weren’t obvious at first. For example, in social communication, they might have had differences in interacting with other people. In repetitive behaviors, they might always need things to happen in the same way or have strong reactions to certain sounds or textures.

For social communication, signs might include:

– Rarely using language to talk to others

– Not speaking at all

– Rarely responding when spoken to

– Not sharing interests or achievements with parents

– Rarely using gestures like pointing or waving

– Using limited facial expressions

– Not showing interest in friends or having trouble making them

– Rarely playing imaginatively

For repetitive behaviors, signs might include:

– Lining up toys in a particular way over and over

– Flicking switches or spinning objects frequently

– Speaking in a repetitive way

– Having very narrow interests

– Needing things to always happen the same way

– Struggling with changes to their schedule or activities

– Being sensitive to things like loud noises or the feel of certain fabrics

Understanding these indicators of autism helps professionals make the right diagnosis for autistic children.

Listen to the podcast episode here, or watch it on YouTube by clicking here.

Related Topics:

What Is Autism?

Autistic Definition and Prevalence

If you use visual supports in your classroom or home, you are going to want to sign up for this free Visual Supports Starter Set ASAP! Click here to have one sent to your inbox. Also, be sure to read more about visual supports and how they can help autistic children here.

Visual supports starter set

Leave a Reply

Your email address will not be published. Required fields are marked *