“When you’ve met one autistic child, you’ve met ONE autistic child.”
We’ve all heard it dozens of times… And it’s true. All autistic children (and adults) are unique.
We all have unique needs, strengths, and struggles.
But while every autistic child is entirely unique, every parent of an autistic child goes on a specific autism journey.
Time and time again, I’ve watched parents walk through these distinct stages from getting their child’s diagnosis to becoming an ally to the autistic community.
While it might be tempting to skip around in different stages, the parents who have the easiest time parenting and advocating for their autistic children go through each of these stages in this specific order.
Think of this like your Autism Journey Blueprint, your step-by-step guide to becoming the best parent, advocate, and ally you can be for your autistic child.
With all that said, let’s dive into the 6 stages of every parent of an autistic child’s autism journey.
6 Stages of Every Parent of an Autistic Child’s Autism Journey
(Pssst: Check out the bottom of the post for a free printable Autism Journey Guide!)
#1 The Diagnosis Stage
The Diagnosis Stage is the first stage in every parent’s autism journey because of course it starts with learning that your child is autistic.
But it definitely doesn’t end there…
See, the Diagnosis Stage isn’t just about getting your child’s diagnosis, it’s about accepting it and fully processing it.
It’s not enough to simply recognize signs of autism in your child, reach out for referrals, and get a diagnosis from your child’s doctor or specialist.
That’s the first (and often smallest step) in this stage.
This stage is more about understanding your feelings about autism (some that you may not even be aware you have) and accepting autism as a natural and positive part of your autistic child.
Now depending on your experiences before your child’s diagnosis, this stage may go quickly or it may take some time.
For me, the longest part was waiting for our appointment with the neurodevelopmental pediatrician. The acceptance happened long before that appointment.
For others, though, it may be a shock and you may need a bit more time to process.
(Psst: If that’s you, check out this post about what to do when you get your child’s autism diagnosis)
#2 The Discovery Stage
The next stage on a parent’s autism journey is the Discovery Stage.
And I’ll be honest, this is a stage that most parents struggle with.
In this stage, your focus is on becoming the expert on your autistic child — not autism in general.
This is where you figure out your child’s unique sensory preferences and communication types.
It’s also where you figure out their triggers and their natural response to those triggers.
Basically, you want to know all there is to know about your child as a unique individual.
Because the fact is, you can’t meet your child’s needs if you don’t know what they are.
Now the main hangups I see parents of autistic children struggle with in the discovery stage are:
- Thinking you can’t find out what a child needs because they don’t speak.
- Thinking your autistic child needs something because “autistics” need it.
- Thinking they already know all there is to know about their child.
So you’ll want to watch out for these, because they’re actually completely untrue.
Your autistic child communicates with you, even if they aren’t communicating verbally.
Your autistic child is an individual, and they don’t need a specific accommodation or therapy because other autistics do.
You will always be learning new things about your autistic child as they learn and grow. Take the Discovery Stage seriously!
#3 The Accommodation Stage
The Accommodation Stage comes next, and it’s all about meeting those needs that you uncovered in the Discovery Stage
I know it can be tempting to jump to teach your autistic child new skills, and that is where most therapists will encourage you to focus first.
But I’ve found that it is much easier on you and your autistic child to teach new skills after you focus on meeting their needs on a regular basis.
How can we expect our children to try new challenging things when they’re facing every day dysregulated and full of anxiety?
That’s why it’s so important to let your child know that you are there for them, and you are committed to meeting their needs.
Creating a sensory diet is a huge part of the accommodation stage, as is creating plans to manage your child’s triggers.
This is also the stage where you’ll work to reduce the demands on your autistic child.
Beyond that, you’ll be building out routines so that your child knows what to expect from day to day.
Doing this will lower your child’s anxiety and set them up to be able to learn new skills.
Here’s the thing: when you keep as much of your child’s life consistent with routines, low demands, and regular sensory input, they will be more ready and able to stretch themselves to reach new goals and learn new skills.
#4 The Success Stage
Next we have the Success Stage, and this is where most parents and professionals try to jump to.
So I’m going to remind you again — it is incredibly important that you move through these stages in order, and if you try to start the Success Stage without the first three stages, you and your child will be much less successful.
With that out of the way, the Success Stage is where you start to set autistic-led goals with your child.
It’s where you start to teach them new life-skills, and where they start to gain more independence.
So this stage may include things like creating plans to help your child manage their triggers, or creating a calm down plan that your child can use in-the-moment when their fight, flight, or freeze response kicks in.
This is also where teaching skills like reading, cooking, using the bathroom independently, or even showering might be taught.
This stage also has a strange balance between presuming competence — that is, believing that your autistic child is capable of anything — while also accepting them as they are, and being okay if they don’t do the new things you want them to do.
Because the fact is, your autistic child deserves to be presumed competent.
And they also deserve to be accepted and supported, even if (er, especially if) they don’t do things independently.
And as their parent, as their fiercest advocate, it’s your job to do both at the same time.
#5 The Advocacy Stage
And that brings us to the golden stage — the Advocacy Stage.
The Advocacy Stage is exactly as it sounds. It’s all about confidently advocating for your autistic child at school, with friends and family, and in the community at large.
This is where you take all of the knowledge and experience you’ve gained in the previous stages, and you use that to educate others and help them to help your child.
And if you look at the journey as a whole, everything you’ve done has been leading to this point.
You can’t advocate for the other adults in your child’s life to embrace autism and neurodiversity if you haven’t accepted the diagnosis yourself.
You can’t advocate for your child’s needs to be met if you don’t know what those needs are.
You can’t advocate for your child’s needs to be met if you don’t know how to meet them.
You can’t advocate for your child to be taught new skills in a respectful way if you haven’t taught them a new skill in a respectful way.
They key in the Advocacy Stage is that it helps you to get confident advocating in a variety of situations.
Mother-in-law expecting your autistic child to act neurotypical?
School using ABA strategies to encourage compliance?
After-school club refusing to allow your autistic child to attend because they don’t sit quietly in a chair?
During the Advocacy Stage, you will know how to advocate in all of those scenarios, in a way that doesn’t alienate you or your child and reaches a compromise that works for everyone.
#6 The Ally Stage
Okay, I know this post is ridiculously long, but I didn’t want to make 6 separate posts and have you click around everywhere. So thanks for sticking with me.
(And there’s a free printable guide in the next section… You’re so close!)
So the final stage on the parent of an autistic child’s autism journey is the Ally Stage.
And the Ally Stage is where parents of autistic children join together with autistic self-advocates so that they can have a bigger impact on creating a better society for all autistics.
Here’s the deal: I believe to my core that we are putting in the work right now to change the world for all autistics.
And I believe that autistics are leading that change, but we won’t get nearly as far without parents joining with us and becoming true allies.
In the Ally Stage, you are amplifying autistic voices and doing the emotional labor fighting ableism within your unique circle of impact.
This is when your advocacy goes beyond making the world better for your autistic child, but for all autistics.
And that’s a powerful shift.
Now if you’re reading this and thinking ‘well, I’m already an ally, and I didn’t have to do all those other stages first…’ I want to challenge you.
Can you be an effective ally if you haven’t accepted and embraced autism and neurodiversity?
Can you be an effective ally if you haven’t figured out your autistic child and found ways to effectively meet their needs?
Can you be an effective ally if you aren’t confident in advocating for your autistic child with your school’s principal and your mother-in-law?
These six stages are all incredibly important, and going through them in order is the best way to have the easiest time becoming the parent, advocate, and ally that you want to be.
Free Printable Autism Journey Guide
Phew. This blog post was a doozy, and I’m proud of you for sticking with me through it.
So if you see yourself on this autism journey, and you’re interested in moving forward and making progress, I encourage you to download the free printable Autism Journey Guide.
This guide walks you through each stage in the journey, and it outlines some next steps that you can take to continue to make progress and to get guidance and support along the way.
Enter your information below to download your free guide!