Your child has been diagnosed as autistic… things to do before ABA.
Written by an autistic adult and neurodiversity affirming speech therapist.
1. Understand Austim
Autism is a neurodivergence, meaning it is a brain difference. Autistic brains develop, understand, and interact with the world differently.
This means that those milestones charts do not apply to your child. Instead of a linear, step-by-step development, autistic people develop “spiky skills.” This means they may develop some “later developing” skills before the expected age of their allistic (non autistic peers) and they may have some skills not yet developed that their peers already have. Because autism is a spectrum disorder, each child can have their own combination of advanced or self-paced development in these areas.
They may:
Excel in areas are considered “advanced.”
Have delays in areas typically expected at their age
Develop skills in a completely different order than their peers
To best support your child, let go of milestone comparisons.
Autism’s primarily differences are in:
Motor development
Communication
Sensory processing
Social interaction
Because autism is a spectrum, each child has a unique combination of strengths and challenges. Each child’s autistic profile is different and they cannot be defined by standardized testing.
For example:
A child may have incredible visual processing and memory and not yet be speaking
Another child may be highly verbal and hate wearing clothing or sensory input
2. Learn about your child’s autism profile
Your diagnosing provider identified autism—but likely didn’t fully break down your child’s strengths, preferences, and supports needed.
This is where specialists come in:
Speech-Language Pathologists (SLPs)
Occupational Therapists (OTs)
Physical Therapists (PTs)
These providers help you understand your child in a meaningful and encouraging way.
What This Looks Like in Real Life
Communication
Your doctor identified communication and speech development differences. Your Speech-Language Pathologist (SLP) identified that your child uses echolalia and scripting as a gestalt language processor. The SLP understands your child’s scripts are intentional communication. Your SLP encourages scripting/echolalia, affirms their communication efforts, and their communication begins to resemble conversational speech when they use a child-led, play-based, gestalt-focused approach in your child’s speech therapy sessions.
Sensory processing
Your doctor identified that your child has self-stimulating and self-harming behaviors. Your occupational therapist sees that your child is overstimulated and their body is communicating that their brain doesn’t feel comfortable. Your OT begins to teach you about sensory processing, how your child specifically perceives the world, and how to help dull what is loud in their brain, and how to raise the volume on what they don’t hear. Your child begins to regulate themselves by going into their room for quiet breaks, asking to be wrapped up in a blanket burrito instead of body slamming their sibling, and days start to feel easier for everyone in the house.
Play skills
Your doctor noted that your child does not make eye contact and plays by themselves by lining up toys. Your SLP joins your child in their preferred play and lines up different toys next to your child’s own lineup masterpiece. Your SLP notices that your child also loves people play, where the toy/activity is the adult. Your child loves jumping into the SLP’s arms and being spun around the room. Your SLP noticed that your child actually enjoys parallel play, that they have their own idea for play, but they enjoy checking into your play scheme when you make a fun sound or sing a song from their favorite show. Your SLP notices your child actually makes eye contact and has joint attention when your child feels safe, and they feel connected with who they are with.
Daily skills and independence
Your doctor said your child should be dressing themselves by this age. Your occupational therapist notices that your child feels safe and connected with you as a parent when you spend time together every morning helping them get dressed; they find comfort in this daily routine. Your child prefers predictability, your OT recognizes this, and helps your child create a new routine with increased independence that feels safe. So now your child gets dressed with you present for connection and as a body double.
Social skills
Your doctor said your child doesn’t socialize with peers. Your SLP understands the double empathy phenomenon (neurodivergent people communicate best with each other), so she introduces your child to another neurodivergent kid with similar interests and sensory preferences. Now, for the first time, your child is playing with a peer, and they don’t have to apologize for interrupting or info-dumping about their interests. Your SLP empowers your child to self-advocate for their communication preferences, identify qualities of a friend they’d enjoy, learn to set boundaries with people, and develop authentic friendships. Social communication green flags.
Selective eating
Your doctor says your child is an extremely picky eater, and you need to force them to eat more. Your feeding therapist says that eating starts with connection and felt-safety. Your feeding therapist wants your child to feel safe around food and have bodily autonomy. Your feeding therapist is patient with your child and allows them to explore foods during play, in unconventional ways, and in non-feeding environments. Your therapist never makes your child touch a food, smell it, or put it up to their mouth. Your child views food-related activities as a point of connection, and they come sit with you while you’re eating and tries a bite of your sweet potato for the first time. Feeding wins!
If your therapists are not seeing your child’s strengths and empowering them, consider finding different therapists who see your child for who they are and not only their “deficits”.
3. Find Neurodiversity-Affirming Providers
Not all therapy is created equal.
Before scheduling services, take time to research and interview providers.
Ask the autism community who their children’s therapists are and how their children anticipate and react to therapy. Read their Google reviews. Look at their social media. Interview therapists BEFORE you schedule a speech, feeding, occupational, or physical therapy evaluation for your child.
Questions to ask:
How do you treat autism?
What does therapy look like for autistic kids? Here’s how it should look.
What do you do if my child has a “behavior” in therapy?
What do you do about non-compliance?
How do you support pathological demand avoidance?
Would you describe yourself as neurodiversity affirming? What does that mean to you?
What continuing education have you taken regarding autism?
What do you know about gestalt language processing?
How do you decide on my child’s goals?
Do you let parents participate in therapy sessions?
What do you consider as a behavior?
How do you support dysregulation?
Where does therapy take place? My kid doesn’t like sitting at the table.
How is the nervous system related to autism?
4. Advocate for Your Child at School
The education system is not set up or equipped for neurodivergent children. Once you know your child is autistic, you become the expert on your child. The best thing you can do is educate your child’s teacher and school about autism, your child’s autistic profile, things that are sensory nightmares for your child, things that regulate your child, your child’s specific learning style, and how to connect and have shared joy with your child.
Examples of advocacy:
If your child learns through songs, tell the teacher to sing songs related to the activities they are doing in the classroom.
Teach your child’s teacher and school therapy team about gestalt language processing with this info sheet.
If your child’s nervous system is triggered into fight/flight when they are told what to do and their autonomy feels threatened, ask the teacher to use declarative language with your child. Explain pathological demand avoidance and people pleasing.
Your child is reported as “unmotivated,” and they bring out a star chart to reinforce their engagement, you advocate for intrinsic motivation and play-based learning so that your child develops a positive self-identity and task initiation skills independently.
Your child has a limited number of safe foods and gags at the sight and smell of unsafe food, you advocate for your child to eat lunch at their desk instead of the group lunch table.
Your child is most regulated when they are moving, so you advocate that your child stands/wiggles/dances at their desk while the teacher is talking so they can actually hear and comprehend what the teacher is saying instead of having to focus on being still.
Your child is a big picture thinker; they need to see the whole picture to understand the task, so you ask the teacher to show the finished product, instead of only giving bottom-up, step-by-step instructions.
5. You create a refuge at home.
The world can be extremely offensive to your child. Living is exhausting, and their brain is working overtime. They come home exhausted, cranky, wound up, and emotional.
You can make their home their safe space.
If your child has strong visual processing skills, consider having a minimalist home, especially in their room, to reduce the visual noise.
If your child is asked to be quiet at school all day, consider getting yourself noise-cancelling headphones so your child can be loud and silly all they want at home to express their authentic self
Your child has a small social battery, so you give them all the alone time they need to recharge without feeling upset that they don’t want to spend time with you.
Your child has a large capacity for heavy work and gross motor play, so you intentionally take them to the park every day.
Your child finds safety in predictability, so you let them watch their current favorite show for the 100th time this week.
You meet their needs. You become their number one safe person. You set boundaries with others in your life so that the people who have access to your life and your child only uplift you.
You sacrifice being “socially” acceptable to allow your child to grow into their authentic selves and have their needs met.
6. You build a neurodiversity affirming circle
You are not alone—even if it feels like it.
If you’re a support needs parent and you experience caregiver burnout, I encourage you to begin counseling and build a community of other parents walking in a similar season of life.
You may feel like you are in the trenches alone, you’re the only family at preschool that has a 7-year-old that isn’t potty trained, a 10-year-old still scripting from Mickey Mouse Clubhouse, or a 4-year-old who is nonspeaking. I promise you, you are not alone. You are not in the right circle.
It is important that you are also regulated and well-supported. You cannot co-regulate your child if you are in burnout and drained. This is your permission to do something for yourself every day to take care of your own nervous system!
7. You exhausted all options and still feel the pull to look into ABA
You’ve been in speech and OT for years and still feel like you need more help. Your child keeps getting kicked out of preschools, and public school isn’t the right fit either.
Look into ABA. Research ABA. Learn the red flags of ABA. Find the unicorns of ABA. Understand that ABA is not inherently bad. Interview ABA providers just like you did with other therapists. Ask your neuro-affirming therapists who they recommend or have had positive experiences with.
Know that ABA is a data-driven field that follows neurotypical milestones. They may talk about your child like they are plot points on a graph. They test to see if your child is developing hundreds of microskills to achieve big milestones. ABA does want your child to succeed. Their measure of success often looks like making eye contact, safe hands, functional play skills, and following directions, which sound great, but often take the shape of masking.
ABA therapy is often executed by young adults with only a high school education and a couple of hours of training. ABA therapists have high turnover because they are overworked, under-equipped, and they are under fire from children whose words they misunderstand, so they have to use their bodies to communicate.
Know that large ABA companies are owned by private equity firms, and they pressure BCBAs to recommend 40 hours of therapy to hit profit quotas. Directors may bully families into coming on Saturdays and not taking vacations and time off from ABA because the family could “lose their spot” if they are not hitting their weekly hours.
Some ABA companies won’t allow your toddler to nap because that time isn’t billable and eats into their profit margins. Some ABA companies won’t call parents to come pick up their child who’s not feeling well and not wanting to work, so they target old mastered goals instead to still bill for therapy.
ABA companies develop their own measure of school-readiness and keep telling you your child is not ready because they have too many behaviors, but your child only acts out at ABA and not at home or with any outside therapists.
If You Choose ABA
Consider in-home services
Observe sessions
Trust your instincts
Advocate fiercely
Leave if it’s not the right fit
Never be afraid to fire an ABA company and try someone different.
Final Thoughts
Your child does not need to be changed to be worthy.
They need:
Understanding
Safety
Connection
The right supports
When you start there, everything else begins to grow.
At Rooted and Rising Therapies, we believe your child is perfectly designed—and our role is to help them become more of who they already are.