Today I received a message from a dear friend. Her little girl has just been diagnosed with autism and she’s wondering what to do next.
I receive calls and messages like this a lot and enjoy getting together with these parents.We’ve gone through the autism diagnoses process FOUR times in our family. First with Dinomite, then Bulldozer, Sunshine and finally my husband.
There are many things I wished I’d known as each of my children were diagnosed as toddlers and preschoolers, that would have made life so much easier, so much happier, and so much simpler.
So today, I share with you what I wish I’d known when my child was diagnosed with autism.
10 Things I Wish I'd Known When My Child Was Diagnosed with Autism
Embrace Autism
So many of the amazing traits my husband has, that I’m attracted to, are autistic traits.
Why Do I Stay Married to an Autistic Person?
He is brilliant.
His memory is out of this world.
Life is never boring because he’s so passionate about so many different things, always wanting to learn more and more.
He is loyal and feels so deeply.
Sure he has weaknesses too, but don’t we all?
And as I always tell him when he gets down on himself, his strengths always outweigh his weaknesses.
Autism is not a bad thing.
My autistic children know their superpowers.
They know that everyone has something.
Sure they struggle with some things like fine and gross motor skills, eye contact, sensory sensitivities, etc., but some people who aren’t autistic struggle with these things too.
There are so many more positives than negatives when it comes to an autism diagnosis,
The number one positive is that you have an extraordinary kid, and now you can start the journey to understanding your child better.
Embrace the Journey
Yes, milestones and epic adventures may come later than you would expect, but because of that, you’ll be able to enjoy them that much more.
Society is so big on rating one’s personal progression of milestones based on a specific standard of what’s supposedly right and wrong for a certain age.
Truth be told, every child develops differently, whether they’re autistic or not.
There’s no need to push or rush things. The brain is ready when it’s ready.
And, if there have been no negative experiences associated with the process to delay it, the brain will astound you.
I always refer back to Bulldozer when talking to people about this.
Bulldozer did not develop a hand preference for writing until he was seven years old.
He could not write successfully on his own until he was eight years old.
All the occupational therapy in the world couldn’t force this process to happen sooner. In fact we stopped OT. His brain wasn’t ready.
But now…
Bulldozer is my best writer.
His penmanship is incredible.
That kid can spell better than his big brother.
He writes for fun, making lists of all of his favorite movies etc.
Don’t even get me started on his reading abilities.
There are many people who judge children by milestones and academic standards, but usually that’s because they struggle with the standards they’ve set for themselves, and are deep into the trap of comparing.
Don't fall into that trap!
Your child will get there. Enjoy every step of the way!
You’re the Parent and Know What’s Best for YOUR Child
There was OT, PT, Speech, Special Education Services, and ABA.
“The services are necessary!” professionals said.
“They will help them!”
And so I signed my kids up for EVERY. SINGLE. ONE.
We had therapists, educators, and specialists at my home EVERY. SINGLE. DAY.
The kids were miserable.
I was a wreck.
The appointments and therapies came with all of this advice about what to do and what not to do.
Some of it contradicted what was said by other professionals.
Some of it I whole heartedly disagreed with.
This of course led to that mom guilt over what I felt was right and why it differed from what professionals were recommending.
Eventually, I learned that whether my child is autistic or not, I’m still in charge.
It is okay to say no to four days a week of therapy because it’s too much, and just choose one day a week instead.
It is okay to prefer a sensory based approach used by an OT, rather than a behavioral based approach like ABA.
It is okay if you don’t get along with a professional and request a new one.
It is okay if you disagree with a service, and just say no.
A wise OT once told me that 30 minutes of therapy a day, no matter how many days during the week it’s given, won’t make a bit of difference. It’s what the caregiver decides to do with the child outside those 30 minutes a day that makes the difference.
If you already feel confident in your ability to help your child be the best he can be, while embracing the autism at the same time, don’t be afraid to say no.
If you feel horribly incompetent and anxious, wait until you feel better, or build services slowly until you feel you’re in the right place.
Meanwhile just love your child fiercely.
And in regards to your child...
Let him be a child.
Hours of therapy a day is healthy for no one.
Self-Soothing Tendencies Are Not Bad; Embrace Them!
When you’ve listened to your child talk about dinosaurs for the last four hours and there’s still no end in sight, you can get pretty tired.
But here’s the thing, all of these things cause your child to feel immense joy, happiness, and peace.
Rituals and routines bring comfort, as does order.
Flapping or any other form of stimming is a self-soothing tool that helps regulate your child.
Those passions and intense interests are just as important as your own interests and hobbies.
So long as they are safe, embrace them.
If they are not safe, find a similar action or activity that is.
Go with the Sensory Approach First
Once the basic necessities of a stable home, food, water, clothing, and heat are in place, sensory needs come next.
It is only when your child’s senses are regulated, that he will feel happy and at his best.
What are the senses you ask?
Just think of the five senses you learned in school: hearing, smelling, tasting, touching, and seeing. And then add a few more like balance, the need to move, lifting heavy objects etc.
How does your child respond to sensory input around him?
Is he extra sensitive or does he crave different forms of sensory experiences?
Auditory Sensory Resources for Children
If your child is extra sensitive to different sensory experiences, how can you help him?
If your child craves different sensory experiences, how can you provide him opportunities to obtain them?
Through providing for these sensory needs, your child will feel calm and safe.
He won’t be afraid of the world around him or exhibit challenging behaviors that you can’t seem to stop.
Visual Stimuli Resources for Kids
After sensory needs are met, then you can start working on things like emotional regulation and communication.
So many behaviors that you're concerned about disappear when you understand and can help your child stay regulated in regards to their sensory needs.
Observe Your Child and Follow Their Lead
In the Montessori world, this is called observation.
You sit back and literally watch your child to understand why they do the things they do.
Unlike ABA, once observation is complete, we recommend you follow your child’s lead instead of insisting that he follow yours.
This Montessori principle truly embraces the individuality of the child and that he is valued and respected.
When you follow your child’s lead, you are accepting him where he is at and letting him lead the way in learning and growth.
You’re affirming your love for him just the way he is.
Through following your child’s lead, a special bond of trust is created. Your child with thrive in ways you never knew possible.
Help Your Child Be as Independent As Possible
The Montessori Method promotes as much independence as possible for infants, toddlers, preschoolers, etc.
As independence is promoted, so many battles, meltdowns, tantrums, and more are eliminated.
How do you promote independence?
We provide the opportunities to be independent in a prepared environment that lets our child participate in anything and everything he can I highly recommend the book: How to Raise An Amazing Child the Montessori Way.
You would be amazed at how much a toddler can do when you provide the right materials and prepared space to do it.
As a child embraces independence, confidence increases.
Confidence brings about the desire to try new challenges. New challenges bring about growth.
Take the word “can’t” out of your vocabulary when it comes to your child.
A Minimalist Montessori Home Tour: The Kitchen
Provide more independent opportunities, and watch your child shine.
Please Note: When you do provide more independence be sure it matches your child's developmental age.
This will most likely be lower than your child's chronological age by birthdate.
If your child is five years old, but developmentally only two years old, focus on activities and tasks that are appropriate for a two year old to ensure safety and success.
Teach Autism Acceptance rather than Autism Awareness
Awareness means that you acknowledge your child’s neurodiversity, but want to change it, or get rid of it.
Acceptance means that you love your autistic child just they way he is, and do not want to change him.
No one should ever be made to feel that they are not good enough the way they are, especially because of autism.
An autistic brain is not bad or wrong. It does not need to be fixed.
It is different and unique. That’s what makes it so beautiful.
Once you have come to accept autism, promote acceptance in your neurodiverse child. Then work on changing the world from there. It will be hard, but it will most definitely be worth it.
And on a more personal note, please stay away from all things shaped like a puzzle piece, or are that focus on the color blue! These objects promote awareness, not acceptance. Wear red instead!
Don’t Sweat the Small Stuff
It is so easy to get wrapped up in what your child can't do and what he NEEDS to learn to be okay.
The fact of the matter is, so many things on those tests are not going to matter one bit in the long run.
If your child can’t button, zip, or snap his clothing items, he’s going to be okay. There are so many clothing options out there that don’t require those skills for kids and adults alike.
If your child can’t cut a straight line, so what? There are paper cutters that can help him out when he’s older.
Bulldozer is a teen and still doesn’t tie his shoes.
I used to worry about this, but the truth is there are so many shoe options out there that don’t require laces. He’s doing just fine!
All of my autistic children have proven time and time again, that when they want to learn something they learn it.
Dinomite decided at age twelve he wanted to learn to tie his shoes and ride a bike. So he did.
At fourteen he's decided he really wants to improve his pencil grasp, so he's doing it.
At age eleven, Bulldozer decided he wanted to learn how to button his church shirt. So he did!
The worrying is so not worth it. It only stresses everyone out, including the autistic child.
Have Fun!
Autistic children are so much fun!
I love how passionate they get about things they love.
Because of my autistic children, I have learned about so many interesting subjects.
It is so much fun to join my autistic children in their worlds. Their worlds are truly magnificent.
Once I understood my autistic children’s sensory needs, the sky was the limit as to what we could do, as I followed their lead.
I think my favorite experiences have included enjoying Bulldozer’s rollercoaster and theme park passions.
We were able to have so much fun together at Universal Studios.
Dinomite’s love for history, especially war history, has provided us with so many incredible experiences.
We were able to check out an awesome battleship together and go to so many cool museums.
Autism is not bad or wrong.
It is different, amazing, and absolutely incredible.
I know that the diagnosis can be overwhelming and cause parents to grieve, and that’s okay.
Life isn’t going to be the way you assumed it would be, and you now need to make adjustments.
Grieving that your child has autism is not a sign that you think it's a bad thing. It may just mean that you're struggling with change.
I know what it’s like to have so many services and opinions thrown at you the minute you receive the diagnosis.
Hang in there! Take advantage of the services that help, and don’t feel guilty about the rest.
Most importantly, take care of yourself, so you can be the best parent for your child.
Both of you deserve that!
And if you're still feeling lost, check out the book recommendations below! They are my favorite go to resources!
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