Become a Better Ally: 23 Things I Wished I Knew About Autism When My Child Was Diagnosed

June 18 is Autism Pride Day. Autism Pride celebrates the beauty of neurodivergence and all the possibility it brings to the world. This post is intended to help us all be better allies to the neurodivergent community, today and every day. Here are 23 things I wished I had known five years ago in order to be a better ally to my child and autistic community members.

The intended audience of this post is for everyone, especially neurotypical (NT) parents, siblings, educators, peers, co-workers, policy makers, bosses, and caregivers who want to support autistic people.

Also to the neurodiverse (ND)/ #actuallyautistic people, I hope I got this right. If I didn’t or missed something important, please tell me!

1. Can you define autism, right now? If you can’t, then you probably don’t know much.

When it was suggested that my one and a half year old might be autistic, I was paralyzed with fear. How in the world would I help my child? Where do I start? I cannot remember the exact moment when it happened, but at one point the epiphany came: I knew NOTHING about autism and this ignorance filled me with dread and fear. Once I was able to define autism without googling it, the anxiety began to subside. I became receptive to learning more and better equipped to help my child. Start with a definition and by observing and learning, rather than relying on my ignorant presumptions. when I did that, I ceased to worry about all I didn’t know. Then grow from there.

2. Autistic is not a bad word, so don’t act like it. You’re allowed to say autistic. In fact, most people on the spectrum prefer this phrasing because their neurology impacts their entire life experience. However, not all autistic people prefer this. Want to know what to do? Ask the person what they prefer! Does it feel weird to ask them? That might be because you think of it as an insult. Autistic is a type of brilliant neurodivergence. It’s not an insult. If you still feel weird about it may mean…

3. One’s level of (dis)comfort when discussing autism indicates how much learning needs to happen. So learn! I’ve written about it here on the blog, but also follow the hashtag #actuallyautistic to learn about autism from autistic adults. I share many of my faithful resources on my Instagram @sensationalstims.

4. Tell your child ASAP. Do not hesitate to tell your child. Why?

A. Hiding an autism diagnosis implies there is something to be ashamed of. I assure you there is not.

B. If you feel ashamed, you need to seek help. I say that with the utmost love and kindness. Lots of folks who have a neurodivergent child learn about their own neurodivergence and/or suppressed traumatic past. Seek help. You’re not too busy for this. There is no shame and taking care of yourself is important! A healthy ally is an effective ally!

C. Your child is amazing and learning from your them is a wonderful way to learn about what autism means for your child.

D. Most autistic people who were diagnosed as adults will tell you they’ve always known they were different than neurotypical peers. Your child likely already knows there’s something different- use the right words to explain it!

E. Understanding different needs significantly reduces stress on the neurodivergent person (and neurotypical people, too).

F. Tell siblings and people living in the house, too. Why? Because you live together! It’s helpful to know about family members’ different needs.

5. Stimming is important! Autistic people have a different sensory processing system. Stimming is a way to deal and cope with different sensory needs. Check out my book about stimming. It’s an enlightening, sweet book about allyship and authentically represents what stimming is. From now until July 18th, we are having a BOGO special so you can keep one and share another!

6. Some people will absolutely break your heart in their unwillingness to make the world more inclusive. As you become more aware about autism needs, some responses from family, friends, even medical practitioners may surprise you. Trusted people might be ignorant which translate to mean, ugly things. It hurts. It’s confusing. Sometimes you will need to let those people go and sometimes you can educate them. I’ve been on the giving and receiving end of this experience and it’s rough. But I also have learned so much from my mistakes and from transgressions committed against me and my child.

7. Some people will restore your faith in humanity. Cherish those kind, loving people. Remember them instead of the heartbreakers. Become this person. I’ve also been on the giving and receiving end of this experience, too, and it’s all I ever need in the world.

8. “Curing” autism is wrong. There are MANY outlets that want to “cure” autism. This is highly offensive. I was looking through all the notes I have taken over the past 5 years and early on in my journey I went to a training called “Fighting Autism with [insert the name of quack doctor here].” Autism is the way a person is. Acceptance is the only cure needed. If you want to “fight” the way a person is, it’s a traumatizing, abusive approach.

I shudder at some of the “professional” advice I paid for, believed, and followed. However, there are things you can do to support an autistic person to help them experience the world in a healthier way. For example, food tremendously impacts a person’s overall health. A common experience for NDs with sensory sensitivities is that they struggle to physically tolerate certain foods. Uniform tastes/textures tend to be preferred and this uniformity is a guarantee in highly processed foods. But highly processed foods have unquestionably adverse health effects. There are therapies and support for this that I’ll share about later. Learn from professionals about ways to work with sensitive palates so your loved one can be healthy, and also have their legitimate needs met!

9. You may have feelings of guilt the more you learn about autistic people and their needs. Some may feel guilty with regards to their attitude. Others might realize therapies/trainings attended in the name of helping were actually traumatizing the one you intended to support. I know I have struggled with this immensely. All I can say is that when you know better, you do better. Guilt and shame help no one. Move forward by acknowledging your mistake and vow to do better by first listening to autistic voices.

10. A litmus to discover if a training/therapy is appropriate or not: replace “autism” with another group’s name and see how it sounds. Here’s what I mean: I am able to tell by using a different noun instead of “autistic” in the description of the proposed training/therapy if it is problematic or not. I share this because it is often overwhelming to learn, implement, and adapt to a person’s special needs. It’s also expensive and very time consuming; most parents don’t know where to start or what to do.

For example, instead of the aforementioned “Fighting Autism with Dr. Quackenstein” training I attended (see tip #8), I replaced the word “autism” with the word “Latinos”, and said it aloud. Let’s see how it sounds: “Fighting Latinos with Dr. Quackenstein”. Wow!

It immediately sounds wrong. You can do it with any noun you prefer and prepare to be amazed and how awful really intelligent people can be.

11. Don’t use the terms “high functioning” or Asperger’s. The implications of these terms are laden with ableism. Autistic people have varying support needs that fluctuate over time, so instead of “high functioning” (because we have no clue how much effort/work it takes for an autistic person to be perceived as ‘high functioning’ aka neurotypical), it’s much better to say describe a person’s support needs. For example, “Sally has low support needs in the area of math, but high support needs in executive functioning skills.”

Asperger’s is often used as a synonym for high functioning and implies that a person is only a smidge autistic. Actually, Asperger is the last name of a Nazi doctor who did terrible things during WWII, including murder children. Also, Asperger’s (since 2013) is no longer a recognized label on the DSM-5. That’s because…

12. A person is either autistic or not autistic. Similar to being pregnant, you can’t be it a little or a lot. People are autistic or not. While neurotypical people may have some autistic traits because autistic traits are human traits, we are not all a “little bit autistic.” Just like you would never say to a that because you and and a pregnant lady both have lower back pain that “we’re all a little bit pregnant”, don’t say “oh we’re all a little autistic” to an autistic person. It’s rude, untrue and not perceived as the sweet bond you think it might be. Also unlike pregnancy, autism is lifelong. A person cannot outgrow autism. Which leads me to my next point…

13. Autistic children become autistic adults. The autism spectrum is wide and depending on a person’s access to healthcare, support systems, intellectual capabilities, unique life experience, geographic location, gender, culture, socio-economic status, etc., the presentation of Autism and support needs will vary. But autism doesn’t go away with age. And since autism cannot be detected purely by visual cues, it’s always best to just recognize that sometimes people need help whether they have a diagnosis or not.

Getting an official diagnosis is a privilege. It takes a lot of clinical experts to get a diagnosis and it takes a long time to do. Usually people who can afford health care get this, while many others don’t. Respect those who have had obtained an official diagnosis and those who cannot afford one.

14. There will be awkward moments. Communication differences often cause social distress for both neurodivergent and neurotypical folks. Always presume competence and recognize that everyone is doing the best they can.

Most often, because communication styles differ, neurotypical people often feel offended by an autistic person’s linguistic faux pas. Because a NT usually has the social power, they are the ones typically considered “right”.

Neurotypicals, remember the inherited the privilege of being born neurotypical. It’s significantly easier for you to understand the social nuances of the NT world that impact every element of life.

As a parent who routinely finds myself in extremely awkward situations with my child and another person, I can assure you we’ve never died from it. Lean into the awkward.

15. If you’re not sure why an autistic person says/does/thinks a certain way?: ASK! My entire world shifted when I realized there are autistic people who are more than happy to share their insights and experiences and often do so for FREE!

There is no better expert on what autism is than asking an actually autistic person. Better than even asking, simply listen and learn! I follow the hashtag #actuallyautistic as well as a variety of specific accounts. This was especially helpful when my son was preverbal. These adults’ stories, wisdom, and knowledge stunned me. If you follow @sensationalstims, I share many helpful tips from a variety of accounts.

Bonus: I now get to ask my own child about his needs, preferences, and experiences.

16. There are lots of ways to communicate. Many autistic people struggle to converse verbally, but AAC (Augmentative and Alternative Communication) devices, sign language, writing, and behaviors are all legitimate, helpful ways to communicate. If you know of an autistic person who struggles with speech, find other avenues to connect and resist the urge to only value spoken language.

Also, depending on the stress load a neurodivergent person is under, sometimes the capacity to communicate verbally significantly declines. So if a neurodivergent person doesn’t answer right away, even if they usually speak, this may be due to other mitigating factors.

Neurodivergent folks often shed a light on problematic social practices and confusing figures of speech by acknowledging (or not acknowledging) certain social things. Instead of writing off these unique observations/behaviors as idiocy, the kind thing to do is either to explain why something is a certain way or acknowledge that while something might not be entirely practical, discuss how to handle the social situation in a socially acceptable way.

Additionally, what neurotypicals may label as rude might feel direct to a person on the spectrum.

17. Neurodivergent Love Languages. I saw this tweet from Amythest (@neurowonderful) and need to directly quote it: “The five neurodivergent love languages: infodumping, parallel play, support swapping, Please Crush My Soul Back Into My Body, and ‘I found this cool rock/button/leaf/etc. and I thought you would like it”. These terms all relate to different, sacred ways a neurodivergent person might share their platonic or romantic affections. If an ND shares love with you in a unique way, feel honored because many autistic people have learned to mask their true self due to negative social consequences. Also, these ways to share love are not ONLY for NDs, but they tend to be more common for NDs than NTs.

18. Be EXTREMELY careful when financially supporting autism foundations. When it comes to autism research, not all foundations are created equal. Many of these places have worked to eradicate autism (read: practice eugenics). Here are good ways to tell if a foundation is worthy of your money:

A. They hire autistic people to learn about autism and the autistic experience.

B. They find ways to support autistic peoples’ needs, not suppress, mask, or force compliance and proudly share it with their supporters.

C. They do not infantilize autistics or view autism as a tragedy or disease to overcome, but celebrate the beauty of the neurodivergent mind and all the possibility it brings to the world.

D. Though autism rates are on the rise, it remains one of the lowest funded areas of study in the United States. It’s important to think about who we fund and who we don’t in the process of rectifying this sad fact.

19. Your attitude and language matters: be mindful of the words you use. How you act and talk about a person’s neurology will significantly impact their life experience. Much of the anxiety and depression autistic people experience are due to trauma, not autism.

20. Autistic/ Neurodivergent people live in a neurotypical world; they are usually not in positions of power. It can be very challenging, complicated, confusing and exhausting. Just because some things might be obvious/simple/easy for an NT does not make it so for ND people, who are almost ALWAYS required to make an adjustment, not the neurotypical person in a position of power. If you want to be an ally, explain things simply and give people time to adjust. Pro tip: these approaches are helpful for nearly all humans!

21. Pathologizing differences is wrong. A common reason family’s fear an autism diagnosis is because it is often pathologized or phrased in ways that are similar to life-threatening illness. Here’s a common one: Know the signs of autism and get treatment right away!

I’m sorry, am I looking for a neurological difference or stroke signals?

Often, typical autistic traits are listed like symptoms which freak out inexperienced parents! For example, lining up toys is a common identifier when starting the path to diagnosis. Is this type of play inherently bad? Of course not! However, recognizing and diagnosing autistic traits helps people get appropriate services and assistance.

22. Address needs without attaching judgement. An ally does not judge another’s need, but accepts what it is and helps meet the need.

Sometimes autistic people are gifted at things that you might not value, and not very good at things you have determined are necessary. Please resist the urge to shame a person for engaging in “immature” play, or “hyper-fixating” on something you don’t care about.

There are things that autistic people will need to learn that might have been simple/easy for you or other neurotypical children. So what? If you find yourself saying things like, “she should know how to do this by now!” or “this is so easy why can’t you just do it this??” Or “be more flexible- why do you care so much?!” These shaming statements do not support or affirm an autistic person, but encourage masking and burnout.

Remember that milestones can come at varying ages and give people time to develop skills and have a healthy life experience.

23. Celebrate neurodiversity today and every day! I am so thankful to live in a world that is beginning to tap into the power of neurodivergence. The more we learn about different manners to solving problems, viewing the world, and our own unique needs, the better of we will be.

Thank you for reading. I hope this all helps us be better allies to the growing neurodivergent community. Please share and don’t forget to follow @sensationalstims on Instagram and Facebook!

I honestly could add more, but I tried to write the most important aspects that helped my family. Is there anything I missed or something you found interesting? Tell me!

Concerns and possibilities.

At first I hear honking horns

It’s a parade of children waving

This cheering fills me.

Hopeful is how I feel.

I go inside

Then I think about the ones

Who rely on food at school.

They go and pick up their meals.

Now we need volunteers to help.

This place of enlightenment is also a food bank

It has been for some time.

They are  getting worried.

So am I .

Something doesn’t seem right.

What happens when the masses grow hungry,

And no one volunteers to feed them?

When we grow weary of this hibernation,

What happens then?

Thomas Jefferson once said, “if people let the government decide what foods they eat and what medicines they take, their bodies will soon be in as a sorry state as the souls who live under tyranny.”

*

This pandemic is no fluke.

It is a magnifying glass

On a wound that’s been around since before Jefferson. 

I write because I agree with his stance that, “the price of freedom is eternal vigilance”.

He was a founding father, ahead of his time in all ways political, economical, agricultural. 

I respect his work, despite the fact that he owned slaves and still dared to say, 

”Equal rights for all, special privileges for none.”

Can we leave room for the possibility that even a hypocrite can sometimes be right?

Maybe even the likes of Jefferson might have been unintentionally contributing to the problem that plagues us to this day. 

What a privilege it must be to have flaws and make policies that shape our country.

*

I recognize that even good leaders are deeply flawed. 

I see it easily in the ones I choose, and not as well in the ones I did not.

I still think that Jefferson had insights the average person didn’t, even though he was your average hypocrite.

*

I heard a gunshot yesterday 

While in quarantine.

It was 6am

Somewhere in my neighborhood

Close enough to rattle my window

And shake my soul.

Do I call?

“A random gunshot?”, they would sneer.

“From where?”

I would ask, “What good reason does one have to shoot

So early in the morning?

In a neighborhood like mine?

Something doesn’t seem right.”

But who would I call and what would I say? I dare not ask the question to strangers who are already taxed with their essentialness.

It’s a random threat

And only a possible death

“From which direction?” they would ask.

And since I do not know

I do not call.

Even though they might be bleeding out,

Alone and hopeless-

It is not my job to save the ones I cannot see.

But more than that, I do not know what to say

Or how to know

Nor whom to call without seeming foolish.

I don’t want to seem foolish.

So quietly I pray and write this.

Maybe this is foolish.

*

I use my money to stimulate by consumption.

The irony is not lost on me

The double meaning of consumption.

I fear this is what caused all our problems in the first place.

A trillion dollars

Trillion with a T

In the form of tiny drops into our buckets

To save our country without a system

No web to help those working

Essentially 

Hourly

Many with no pension or healthcare 

Dying

For $15 an hour

I remember Jefferson once said, 

“If the American people ever allow private banks to control the issuance of their currency, first by inflation and then by deflation, the banks and corporations that will grow up around them will deprive the people of all their property until their children wake up homeless on the continent their fathers conquered.”

*

Then I look and see

Others storming capitols with guns in hand,

And flags, 

Some representing a time long ago, not today

They demand liberation

In the face of medicine

And science

After all, Jefferson, the man I think has some reason and foresight- whose face is on a bill-once said:

“What country can preserve its liberties if its rulers are not warned from time to time that their people preserve the spirit of resistance? Let them take arms.”

They want to stimulate

They want to consume

They want liberation by returning to the America their grandparents knew

I fear it is already gone

What a privilege it must be to have flaws and still share an opinion.

*

The irony is not lost of me when they say, 

“What right do you have to police me?”

But they then police everyone else in their words and deeds.

We understand they have a right to be so patriotically demanding.

But then I think of all those peaceful protestors

Vying for legal policy change, kneeling, speaking, voting, marching-

Shot in their tracks for daring to question a broken system

That breaks them.

They looked different.

This seems to be the main concern. 

These people look different too. 

They’re all threatening the status quo,

In the ways that they’re allowed, that is. 

*

I cannot believe what I witness, even on the news.

What can I trust?

But then, when I want to turn it all off, I think of Jefferson when he said, 

“When the speech condemns a free press, you are hearing the words of a tyrant.”

Wait. 

Did he say that?

No, actually he said, 

“Our liberty cannot be guarded but by the freedom of the press, nor that be limited without danger of losing it.”

The first one seems like he said it though, doesn’t it?

*

Let’s promise to always critique a free press that is sponsored by someone selling something.

And remember we don’t have to buy it.

*

We don’t have to buy it.

*

I must find a way to trust 

Without consuming.

I understand.

*

Funny what demands we accept.

Closures without closure. 

No comprehensive plan at first, beyond a week or two.

Funny what is not questioned:

A broken system too expensive to adjust,

Authorities,

Lack of health care,

and $1200 a piece to “help”.

Funny what is questioned:

Convenience, security, economy over health.

Priorities, I suppose. 

*

Jefferson’s warning echoes in my ears,

“Yes, we did produce a near-perfect republic. But will they keep it? Or will they, in the enjoyment of plenty, lose the memory of freedom? Material abundance without character is the path of destruction.”

Today I pray we leave room for possibilities,

That near-perfect can still be better.

For memory, character, and discernment

in all.