28/04/2025
April is coming to a close, a month that has been chosen to talk about autism. There are so many divisive topics this year, and in all fairness to everyone it is hard for us not to be a little emotional about these topics because it involves our children and loved ones. I think moving forward toward solutions that meet everyone's needs and can keep us united is going to require a little more kindness...among other things.
Life has been keeping me very busy these past few months, but as a result some good things are coming together that I hope to share with you soon.
I don't typically get on here and share much about my personal experiences, thoughts, and views but may start doing so to contribute more to the conversations taking place that affect us...would that be alright?
We need to have more conversations - in safe, judgment free places without fear of being attacked or belittled so we can talk openly about the things that affect us.
I shared this on my personal page with friends but want to share it with friends here too.
Feel free to share your own thoughts and experiences...just please be kind. 🙂
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We are clearly not all "in this together," and that has got to start being okay at some point. My autistic son who is a literal freaking genius, who can sound like a college professor when it comes to certain things has some really, really big struggles when it comes to other things.
They told me when he was younger that meant, "he has splintered skills."
Splintered. Umkay. But because he is so verbal and so amazing in some ways, people expected and frequently demanded so much more from him in every way. To the point when he couldn't "measure up" or meet certain expectations, they thought he was just "lazy" or "choosing not to."
Then they started punishing, excluding, secluding, and restraining him.
Then his self-esteem started spiraling.
Then he started hating autism and hating himself and began seeing himself as defective and broken because he could only see himself through his inability to fit in, perform, and meet all the expectations of others. It was all about everybody else, fitting in where he couldn't, and doing what they wanted, rarely what he wanted.
So as new verbiage for autism came along, I tried to use some of the new words ways to encourage and help him feel better about himself. To try to help him understand that he has so many incredible strengths ... but he continues to hate autism so much he hates himself. He hates it so much it is hard for him to appreciate his genius and incredible strengths, and I don't know how to fix this.
It's hard some days trying not to wrestle with if only...if only he'd had this or had that, if only this and this hadn't happened, if only that person, that person, and that person hadn't walked out on him or given up or treated him like crap...if only he hadn't been restrained and secluded so many stinking times and made to feel like a prisoner with no say about anything. A thousand if onlys. Maybe tomorrow will be the day I don't wrestle with the if onlys.
He just hates all the words people use to describe autism, and wishes more than anything he was not autistic. Is it because of all the trauma he experienced from different systems, schools, churches, and individuals who failed him? Here come the if onlys again in another form called the could haves and should haves...is there something I could have or should have done differently?
I do wish I had felt more confident about ignoring the so called experts sooner and just followed my gut about what was best for him.
I do wish I had never put him in public school. I wish I had not fought and advocated so hard for him to be in places where he was so deeply traumatized and not allowed to shine just for he who is just the way he is.
At the end of the day he needed to be loved, respected, and appreciated for who he is, the way he is without so much importance being placed on standards, testing, protocols, and procedures.
I understand why for some people on one end of the spectrum they want to be recognized as a different neurotype. The first time my son heard someone refer to him as having a disability he was shocked and outraged and said, "I'm not disabled!" Then he looked at me and demanded to know why he was being referred to as disabled.
I was trying to find an answer and lamely said, "Maybe it's a term society created for those who function differently than the rest of society?"
Until he heard someone else describe his abilities as not being "normal" he never saw himself as "disabled." Somehow being disabled still carries a lot of stigma. It still creates negative images in people's minds as "less than," and sometimes "less important than" mainstream society.
How we describe people with differences matters.
Inclusion, acceptance, awareness, understanding ... those words all sound and look good on paper. Right? Especially on signs and ads at businesses, clinics, and stores. Good buzz words to throw around every April. Right?
Remember when people were "celebrating" autism? My son got mad about that too and thought those people were stupid. I tried to explain to him that maybe some people are just trying to make sense of their world and are trying to see it differently. Maybe they are trying to be positive, maybe it helps them feel better about themselves? He vehemently declared he was never going to celebrate autism.
Most of us are well "aware" of autism by now. Many of us have experienced that "inclusion" sometimes opens a few doors, but the "acceptance" might last only as long as the funding, staffing, or resources. Then when all that runs out the individuals with the need for structure, routine, and consistency are just left hanging.
No one seems to want to talk about the difficult parts of living with their autism. It is still pretty taboo. Why do some people only ever want to hear and see the shiny, happy parts? Who doesn't love a great story, but the best stories usually begin with great difficulties, adversity, and hardships...this should be normalized a little more. Let's be honest, if you're living, walking, and talking your story will have some difficult parts.
If you don't write your story and share your truth, I have experienced too many times that others will twist the facts and rewrite them in ways that fit their agenda and not your truth.
I was scolded a few times when M was younger for being so vocal about the difficult parts. Parts that at times were so horrifically unjust, painful, wrong, and unfair I had to find out if there were others who were enduring some of the same things. I needed to not feel so alone. I wanted my son to not feel so alone. I didn't want to lose my sanity, although I think I might have a couple of times. So very thankful to God, my family, and my tribe who believed in and supported me and my son no matter what we were facing.
I found a whole community of people who listened and cared and let me ramble and carry on and to this day am grateful.
Life can get really messy sometimes. Can we be brutally honest, at times it can get downright ugly. Especially when it involves the ugliness of others.
Some of the biggest battles are finding reasons to smile, to hope, and to carry on in spite of chaos, madness, and mean, stupid people...in spite of the pain of loneliness from being turned away, rejected, ridiculed, misunderstood, and excluded.
Yet, in spite of all the difficulties, there have been some incredible moments of great victory and success. Moments that almost made all the pain and suffering worth it. Please know I didn't share this for sympathy or attention or to make anyone feel bad. I don't need that at all. Neither does my son. This has just been life for the past 22 years. The concept of once a soldier always a soldier for me has carried over to "once a mom always a mom."
April Autism month is designed to help make the world more aware, and inspire it to be more accepting, inclusive, and undertanding. As it comes to a close, it would be great to see it end with those all across the spectrum being more accepting, tolerant, inclusive, and understanding of each other.
If my child hates the word autism but yours feels better being called neurodivergent or autistic or whatever they want to be called...can that just be okay?
Can we stop the comparisons? There are none! Everyone is so so different. Profound, severe, mild, high are functioning labels ... some people hate them but more descriptive language is becoming increasingly necessary to ensure everyone's needs are met.
We have to figure this out. Can we just stop being so offended all the time? Can we step out of our own experiences for a moment to realize that the needs, views, and experiences of others are equally legitimate and valid too?
We need to identify the overarching problem here and that is the reality that one word - the word "autism" cannot possibly capture, define, or portray the full experience of anyone diagnosed with it. Level I, II, or III is just not adequate.
Maybe this is a little simplistic, but perhaps once the spectrum itself is more clearly defined people will feel more at ease and not worry so much about seeing their needs or the needs of their loved ones become lost in the vast expanse of confusion that exists right now about who is who. We don't want anyone to get lost or be overlooked for anything.
No one's diagnosis is any more or any less important because of the severity of the autism. The focus should be on ensuring everyone has equal access to what they need ... along with finding ways to make access more consistent and meaningful for everyone.
Ironically here's what is free and should be fairly easy to provide consistently and that is understanding, acceptance, awareness, and just being kind.
You haven't walked in my shoes and I haven't walked in yours. At the end of the day we only see snapshots of each others lives. Some people only see what they want to see. It's just way too easy these days to judge, complain, criticize, and point fingers. But if before you do that you haven't offered some meaningful solutions or some genuine help and support, then maybe this is a conversation you should sit out.
If your mind is closed and you think you have all the solutions and know all the answers then I challenge you to try your one size fits all approach with every one on the spectrum and let's see how that works.
It won't, it can't and most know that. Let's focus our energies on finding ways to to make plenty of room for everyone in ways that leave no one out, so that no one is overlooked, or forgotten.
The way I describe my child's autism is specific to him and only him. I can't speak for you and vice versa. Finding ways to be at peace with each other while making the world more aware of the enormous differences that exist on the spectrum is critical to our advocacy efforts.
If we want the world to embrace and accept our loved ones maybe letting them see us embracing each other first could be helpful?
It could be a start? We don't seem to be accomplishing much on the route we've been going except perpetuating division, confusion, and animosity.
Thanks for listening to this mama's thoughts. Wishing everyone well, looking forward to a great summer ahead!
~ Annette
