10 Things To Do After an Autism Diagnosis

Written By Nikki Sammet

"Does he say any words?" the doctor asked me at his 12-month well check.

"He said ‘mama’ at 9 months old" I responded.

"So, he doesn’t say any words like milk or cookies?" she asked me.

It was March 2021, and masks were still required in most places. I remember mouthing the words “milk” and “cookies” under my mask, somewhat surprised that I hadn’t realized he wasn’t saying any words. He had been naming numbers from license plates and people’s addresses—so in my mind, he was communicating.

In his first year of life, we had spent most of our time inside as a family as he was born March 3, 2020.. I hadn’t been around many other babies because of covid, and up until that point, Jake was right on track with his milestones. The doctor told me to keep an eye on his language development and keep her updated.

Suddenly, I became hyper-focused on language—pointing to things as we walked around, waving at trash cans. (At a previous well-check, another physician had written off his lack of pointing: “Maybe he’s just not a pointer.”)

At 13 months, not much had changed, and then, at a friend’s child’s birthday party, everything clicked—I knew Jake was different from his peers.

From then on, we started accommodations—behavioral therapy for functional language, and he also qualified for occupational therapy. It was a new world, and at the time, I thought we were just helping my pandemic baby catch up.

Jake had flapped his hands since he was a few months old—mostly when he was happy. I can’t begin to tell you how many times I googled “Is this typical behavior?” and how many times autism popped up in the results. The word started to present itself more clearly as the months passed.

When we moved to Georgia, we stopped all supports to see if preschool would help him assimilate. It didn’t.

And when I saw him spinning in the middle of the classroom while his peers sat for circle time, I just knew his brain worked differently. At first, I thought maybe he was just like me—ADHD. That realization triggered its own wave of emotions as I reflected on my neurodivergent childhood. His neurodivergence was a mirror, reflecting wounds I didn’t even know needed healing.

By 20 months, autism still flirted in my mind, but he had met so many other milestones. He was happy, affectionate, intelligent, and sweet. He made eye contact and engaged with us. It wasn’t until I had my second child that I truly understood what joint attention meant.

As we rounded the bend toward his second birthday, the word autism was screaming in my head—yet it still felt foreign.

Then one night, I shot up in bed and woke my husband.

"He’s autistic," I said.

Six weeks after Jake’s second birthday, it was confirmed.

I wish I could tell you it was an easy day. A day I expected. A day I had fully prepared for. You’d think that, given all the evidence—but it still stunned me.

Relief. Grief. Worry.

Relief in finally knowing. Grief for what could have been. Worry about what comes next.

I was SO LOST. So, so lost in the emotional grief, the overwhelm of finding resources, the anxiety of making the right choices. And at this time, I didn’t have anyone to lean on and ask…I didn’t have a guide. So many questions came up for me…

  • Did we want to do ABA? ( I had learned about ABA because my husband had been an RBT years prior)

  • Who were the best speech-language pathologists?

  • How would we pay for all these therapies?

  • What is the Katie Beckett waiver and how does it help me?

The mental exhaustion was immense—similar to how I still feel some days. But now? Now, I feel equipped. And it’s why I do what I do for you.

It is an honor, a privilege, and my purpose to do the work I once searched for. I am here to guide you through these next steps.

So here are 10 things you should know after an autism diagnosis—and remember, I’m always here as a resource. If you need support, you can connect with me for a free consultation call.

JUMP TO:

  1. What should I do first after receiving an autism diagnosis?

  2. Where can I find reliable information about autism?

  3. Does my child need therapy? What kinds of support should I look into?

  4. Should my child get ABA therapy?

  5. How do I find the right school for my child?

  6. Do I need to reveal my child's diagnosis to others?

  7. How do I handle family and friends who don’t understand autism?

  8. How can I support my child emotionally?

  9. What about my own emotions? This feels like a lot.

  10. What if I still feel lost?

1. What Should I do first after an autism diagnosis?

Take a deep breath. Your child is the same wonderful person they were before the diagnosis. Next, Read this poem - trust me you’ll feel me hug you through the computer. Remember this diagnosis is a KEY to unlock services, accommodations, and most importantly how your kid’s brain operates! What a a gift.

Here are some tips on things to begin collecting as you navigate post diagnosis life

PART 1:

I call this period of time “get your affairs in order” and what I mean by that is after you receive a diagnosis you’re going to get a report with directions on therapies to implement and in order to do that you need to get your affairs in order.

What does get my affairs in order mean nikki!?

Unfortunately we live in a world where little paper rectangles dictate who, what, where we can spend our money. And majority of us rely on insurance to support our children’s health and well being. It’s no different when it comes to autism.

So here’s what to do first:

  1. If you do have insurance— verify your benefits. What is available to you? What is your coverage of services?

  2. Once you know this look at: what can we implement right away?

    1. Many insurance companies will cover x amount of sessions of speech, OT, and PT so this is a great place to begin so your child will receive support as soon as possible.

  3. Apply for Katie Beckett Medicaid.

    • I wish I had know about this resource sooner. The Katie Beckett Medicaid Waiver (also known as the Deeming Waiver) in Georgia is a program that provides Medicaid coverage for children with significant disabilities or complex medical needs, regardless of their parents income.

    • It allows children who do not qualify for traditional medicaid due to income to receive benefits based on their medical condition and level of care needs. It covers therapy services such as OT, Speech, ABA, PT among other things.

    • You can absolutely do it yourself but I would recommend working with an expert like Jami Stocks at Together We Care.

  4. Contact Babies Can’t Wait if you are not working with them already.

    • If your child is under 3 they can get an evaluation through the county (even if they are 2.5!!). Having BCW already established will be helpful once your child turns 3 as you will be able to leverage their help with transitioning to the school system.

    • If your child is 3 or older, the local public school district is responsible for conducting evaluations to determine eligibility for special education services under IDEA (Individuals with Disabilities Education Act).

    • Even if your child is not enrolled in public school (e.g., they attend private school or are homeschooled), they are still entitled to a free evaluation through the public school system.

    • Contact the special education department of your local school district or your zoned school to begin the process.

  5. Ok, But what about ABA? They told me my child needs ABA… questions on if it’s right for your child keep scrolling or jump to it here.

    • When you verified your benefits you may have found out what your coverage is for this type of therapy- a good question to ask is —is it subject to deductible?

    • If you’ve applied for Katie Beckett you are most likely in the waiting game to find out if you were approved and until you’ve received prior authorization you will not be able to use it on your ABA therapy coverage… but something to ask your provider is, “can you reimburse previous services?” to re-bill medicaid once you have it.

    • While you are in this period here are my suggestions:

      1. Book a call with me to:

        1. Educate yourself about ABA, Speech, OT + get your questions answered.

        2. Learn what to look for in neuroaffirming providers

        3. Create questions to make sure a clinic aligns with your values

        4. Navigate the sea of therapy centers out there

        5. Coordinate your other therapies so that everyone is working as a team

        6. Decide if you want to do clinic only or in school, in home, and in community therapy

Ok now that your affairs in order….

it’s time to begin phase 2:

  • Begin educating yourself on autism and neurodiversity-affirming care.

    • There. is. a. lot. out. there… take it in chunks and trust that as time goes on you’ll understand more. Below I have some resources on ways to get educated.

    • Neurodiversity affirming care is: an approach that respects, supports, and validates the natural differences in how neurodivergent individuals (such as autistic people, those with ADHD, dyslexia, and other neurotypes) experience the world. Instead of trying to "fix" or "normalize" a child, neurodiversity-affirming care focuses on understanding, accommodating, and empowering them in ways that align with their unique strengths and challenges.

  • Finding a support system, whether it’s other parents, professionals, or community groups.

    • If It’s hard to make it to live events (me, I’m talking about me— I like a routine ok!) I leverage the power of the internet. Although it can be the wild Wild West it also can be super informative and helpful. Facebook groups and reddit threads have been unbelievably helpful— from asking questions about getting labs done for my 5 year old and receiving real time answers or others helping me find solace in my current situation.

    • If you live in Atlanta Metro here are a few groups to take a look at:

  • Identifying immediate needs, such as therapies, school accommodations, or medical evaluations.

    • Should we keep our kid at school while pushing in supports?

    • Should we take him/her out and do ABA clinic full time?

    • What about getting biomedical interventions?

    • I heard music therapy and equine therapy could be helpful?

    • How will I pay for all of this?

    These are questions most parents have after given direction- let me help you prioritize what should come first based on 1) your goals as a family 2) your child’s needs 3) your financial ability and 4) what is actually realistic

  • Mapping out a plan, but at a manageable pace—there’s no rush to do everything at once.

    • Many parents feel pressure to move and sometimes that pressure to move results in not moving at all. Yes, we want to move so we can support our children faster but that doesn’t mean we need to make rushed decisions. Taking out time to see what resources are out there and fit your family is so important!

2. Where can I find reliable information about autism?

It’s important to seek out neurodiversity-affirming resources that respect autistic experiences. Some recommended sources include:

3. Does my child need therapy? What kinds of support should I look into?

If your child’s psychological evaluation recommended ABA, speech therapy, occupational therapy, or all three, you’re probably wondering:

  • Does my child need therapy?

  • Which therapies are best?

  • Is doing multiple therapies at once too much?

  • How can therapies work together?

Here’s my take—both as a parent and a professional:

  1. Not all children need therapy. A provider who truly has your child’s best interest at heart will be upfront about whether therapy is necessary. Some children benefit more from naturalistic supports, parent education, or environmental adjustments rather than formal therapy.

  2. Can therapy be beneficial? Absolutely. In fact, I sometimes wish my neurotypical daughter qualified for OT because of the incredible skills my son’s occupational therapist teaches him. Many therapies provide practical tools that help children build independence, confidence, and self-regulation.

  3. If your child does need therapy, keep two things in mind:

  • It’s not forever. Therapy is meant to provide support and skills that empower both your child and your family.

  • Make it well-rounded. A multidisciplinary approach works best—think of it like building a team that supports your child holistically.

I often think of Richard Williams’ philosophy when raising Serena and Venus. No matter how great they were at tennis, he ensured they had a balanced life—school, fun, time off, and a well-rounded experience. I believe in the same approach for therapy. While having multiple therapies can feel overwhelming, when the right professionals collaborate, it becomes more effective and efficient.

Some ABA/Speech/OT clinics integrate all three therapies under one roof. Other families, like mine, have separate providers who collaborate—pushing into school or working together through a parent-led approach. The key is making sure the team blends well and that therapy supports—not overshadows—your child’s daily life.

I’ll be sharing a detailed blog post soon on all the different therapy types so you can make an informed decision about what’s right for your child.

Every child is different, and therapy should be tailored to their needs. Some common supports include:

Speech Therapy

Helps autistic children develop communication skills, whether verbal, nonverbal, or through alternative communication methods. Many autistic children experience challenges with expressive language (putting thoughts into words) or receptive language (understanding others). Some are Gestalt Language Processors (GLPs) and require specialized support to develop natural language. Curious to know if your child is a GLP? Check out this blog post and see if it resonates!

Speech therapy is beneficial for children with speech delays, unclear speech, difficulty forming words, or trouble understanding and responding to questions. A speech-language pathologist (SLP) may focus on:

  • Expanding vocabulary and sentence formation

  • Supporting alternative communication (AAC)

  • Teaching social communication skills like turn-taking

  • Helping children understand nonverbal cues

ABA Therapy

ABA therapy supports skill development, emotional regulation, and daily routines through structured interventions. However, not all ABA is the same—modern, child-led, and neurodiversity-affirming approaches prioritize autonomy and respect, while outdated compliance-based models focus on behavior modification.

Families seeking ABA should ask how the provider approaches consent, communication, and behavioral goals before enrolling in a program. A detailed blog post about my experience with ABA can be found here and an upcoming blog entry about questions to ask ABA providers is a FREQUENTLY asked question so it is on deck!

Occupational Therapy (OT)

OT helps autistic children with sensory processing, fine/gross motor skills, and self-care independence. We LOVE OT! It is particularly beneficial for children who:

  • Experience sensory sensitivities (e.g., difficulty with loud noises, certain textures)

  • Have fine motor challenges (e.g., handwriting, using utensils)

  • Struggle with gross motor skills (e.g., balance, coordination)

  • Need support with daily living tasks (e.g., dressing, eating, hygiene)

Sensory-based OT may include deep pressure activities, weighted items, movement breaks, or tools like fidget objects and noise-reducing headphones.

My son particularly benefits from learning more about his emotions and how to label them, practicing tolerance and attending to activities both that he does and doesn’t enjoy. I also have a sensory seeking child who wants to run, spin, crash, and swing and OT supports many of these sensory needs. Curious about if your child could be a sensory seeker or sensory avoidant check out this blog post by sensory processing disorder parent support.

DIR/Floortime

DIR/Floortime (Developmental, Individual-Differences, Relationship-Based Model) is a play-based therapy that builds social, emotional, and communication skills. Unlike structured behavioral approaches, Floortime follows the child's lead, using their interests to foster engagement.

It helps children by:
✔️ Encouraging back-and-forth interactions
✔️ Supporting self-regulation and emotional growth
✔️ Strengthening relationships through play

Floortime is especially beneficial for children who struggle with engagement, joint attention, and flexible thinking.

Other kinds of supports to consider:

Parent Coaching

Rather than focusing on the child, parent coaching equips caregivers with strategies, advocacy skills, and emotional support. This is ideal for parents who:

  • Feel overwhelmed post-diagnosis and need guidance

  • Want to understand autism through a neurodiversity-affirming lens

  • Need strategies for communication, sensory needs, and emotional regulation

Educational Advocacy

An educational advocate helps families navigate the special education system (IEPs, 504 Plans, school accommodations) to ensure children receive the right support at school.

Parents often seek advocates when:

  • They feel their child’s school isn’t providing adequate accommodations

  • They need guidance on special education rights and laws

  • They want a neurodiversity-affirming approach to school advocacy

Alternative & Developmental Therapies

  • Music therapy – Uses rhythm and sound to support communication and emotional regulation.

  • Play therapy – Helps children process emotions and build social skills through play.

  • Adaptive sports & movement therapies – Support motor skills, coordination, and body awareness.

4. Should my child get ABA therapy?

ABA (Applied Behavior Analysis) is one of the most well-known therapies due to it being “the gold standard” of Autism therapies and being one of the only therapies 40+ hours a week covered by insurance, but it is also controversial within the autistic community. I encourage you to do your own research from

1) autistic adults

2) families with autistic children who are in ABA and families who chose a different route (knowledge is so power!)

3) Evaluate by touring some of the centers in your local area

The most important thing is choosing therapies that align with your child’s needs and values. Trust your instincts, do your research, and ensure any provider prioritizes your child’s well-being and autonomy.

A detailed blog post about my experience with ABA can be found here and an upcoming blog entry about questions to ask ABA providers is a FREQUENTLY asked question so it is on deck! You can also request a download of my top 5 questions to ask in the meantime by sending me an inquiry here telling me what you’re seeking!

5. How do I find the right school for my child?

Some families come to me while they are already at a school and others are just getting started. As an educational consultant I help families in many of the different stages of a child’s school journey. From daycare, preschool, into elementary school. And if you have kiddos older than six I still got you! If you are already at a school and the teachers/administration were the ones who encouraged you to get an evaluation this could be a great place to start. Many daycares and private preschool/kindergarten programs can be inclusive and allow push in of services. Others may not have the right supports in place. Take a look at this blog post about navigating neurodiverse schools here in Atlanta for a more in depth view. Some highlights… when looking for an inclusive school, consider:

  • Teacher training in neurodiversity and accommodations.

  • Classroom size and support staff availability (In my opinion and experience: think quality over quantity in regards to student teacher ratio).

  • Sensory-friendly environments.

  • Flexibility in curriculum and support for alternative communication.

  • School willingness to work with therapists and IEPs (Individualized Education Plans) and/or therapists.
    If your child already has an IEP or 504 Plan, review it to ensure it aligns with their needs. If they don’t have one yet, you can start the process through your school district.

Last thing I would note on this: even if a school says they are inclusive they may not be. And they may not be truly equipped to support your child’s needs. THIS DOES NOT MEAN THERE IS ANYTHING WRONG WITH YOUR CHILD. This means they deserve better and a space that is designed for them. Unfortunately, we live in the social constructs of a neurotypical society and our kids have to mold to what we have available rather than what would suit them best. And… the teachers may be wonderful but if the administration is not inherently inclusive then your child’s ability to grow at that location may suffer.

If you have any questions about navigating schools please reach out to me and book a 25 minute free consultation.

6. Do I need to reveal my child's diagnosis to others?

Woof. This one is harder than you think. I still struggle with this. Do I need to let others know? Do they know? Is it obvious? Sometimes it just feels like this big elephant in the room— and maybe just on my side. I mean it makes sense as this is our life— we are an autism family. So, this is a personal decision, and there’s no single right answer. Consider:

  • Your child’s comfort—Some autistic children embrace their identity, while others may not want to share it widely.

  • The context—In some situations, like school or medical settings, sharing the diagnosis can help ensure your child gets the support they need.

  • Who you trust—Not everyone will respond with understanding. It’s okay to be selective about who you tell.

  • Your own boundaries—You don’t owe anyone an explanation. If you choose to disclose, you can decide how much detail to share.

Some parents find it empowering to be open about their child’s diagnosis, while others prefer to keep it private until they feel ready. The key is doing what feels best for your child and family.

7. How do I handle family and friends who don't understand autism?

It’s natural for some people in your life to need time to adjust. And yes, they sometimes may say the wrong thing… they may ask if you’ve tried certain things or if he will outgrow it. They may say, “when is he going to mainstream school?” depending on my current energy bank is how I answer. Many times I love the opportunity to educate and provide information that at one time I had no idea about— because that’s how it works…we don’t learn things until we go through them. Other times, I’ve just let it be and move forward as I knew that it wasn’t worth it.

One time I had an experience where a friend in Jake’s class wanted to have a playdate and I wasn’t sure what to do. If I said “He’s autistic” would they still want to come over? I hate even thinking that could be the case but hey, you just never know. I didn’t end up disclosing but they actually already knew so it solved itself :) But the reason I’m sharing this with you is that just because I’m ahead of you in the journey doesn’t mean I still don’t feel the awkwardness of certain things.

Here are some tips:

  • Provide simple, clear explanations about autism and your child’s needs.

  • Set boundaries around unhelpful or outdated advice.

  • Direct them to resources that promote neuro-affirming perspectives.

  • Find your community—surround yourself with people who “get it.”

8. How can I support my child emotionally?

Your child will thrive when they feel safe, accepted, and understood and this my friends is NEUROAFFIRMING PARENTING! (Workshop coming soon!) Some key ways to support them include:

  • Following their lead—engaging in their interests without judgment. Like for example, my hypernumeric kid LOVES the microwave timer and turning volume up and down in the car. He asks, I do. At night in bed he wants to do math problems over talking about other interests— cool, let’s embrace it.

  • Helping them regulate—providing sensory tools, movement breaks, or quiet spaces. We know when our little guy needs break and sometimes that means we leave a birthday party early or say no to events. And that’s OK!

  • Encouraging communication—whether it’s verbal, AAC, scripts, or gestures ALL of it IS LANGUAGE!! I often hear, “will he ever talk?” when speaking with families and I remind them— he is talking to you—it just looks different than what neurotypical communication looks like.

  • Advocating for them—ensuring they are supported at home, school, and in the community. Staying involved with your kid’s needs is HARD. It’s exhausting. And it takes a toll (see #9). Advocating can be uncomfortable because sometimes you just know something doesn’t feel right but you’re unsure what to ask or say. Educating yourself about advocacy and what is going on with your own child can be helpful when you. have someone to guide you or be a sounding board— let that person be me :) Happy to help!

9. What about my own emotions? This feels like a lot.

When I tell you to go to therapy— I am telling you it’s a non negotiable. Part of the work you’ll do in therapy is processing your emotions, grief, worry, and anxiety. And then after you’ve gained skills and tools from that you’ll dig into YOU. I’ve said this to every single person I’ve ever talked with— my son’s autism diagnosis saved me. It’s the reason I am here today. This doesn’t mean I don’t feel sad and worried sometimes it means that it helped me connect to who I truly am and in order to reconnect with her: I had to do the work. Couples therapy is also very helpful if you are raising an autistic child with a partner because how it impacts one of you may be very different from the other. It’s fascinating how many times one parent is totally on board and the other is still in denial. So remember it’s completely normal to feel overwhelmed, especially in the early days. Here are some things that can help:

  • Give yourself grace—you don’t need to have all the answers right away.

  • Find your support network—whether through local groups, online communities, or therapy.

  • Take care of yourself—burnout is real, and your well-being matters too.

  • Focus on progress, not perfection—small steps make a big impact over time.

10. What if I still feel lost?

That’s where guidance can help. And trust me you’re going to feel lost after you’ve been found. As your child grows so will their needs and demands. Changing therapies, schools, and reworking the plan will take place. How do I know? Because I’ve been through it countless times and my son is only 5! Oak & Hive Consulting was built to help parents navigate the post-diagnosis journey, offering clarity and connection to neuro-affirming resources. You don’t have to figure it all out alone.

👉 Need support? Book a free consultation call to ask questions and get guidance on your next steps.

Nikki Sammet
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