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Tuesday, May 20, 2014

You know what sucks?

I love my son but there are moments where I really resent the Hell out of our situation.  Autism, you really know how to wear a mom out.

Monday morning.  We had just returned the day before from a quick get a way in the woods. (You know, that place without Wifi)  It had been a pretty successful couple of days.  Even pushed our kiddo outside his routine comfort zone a few times and he really thrived.  So I guess you could say I was feeling cocky.

I find the permission slip in his book bag.  I remember seeing it briefly before we left but I was in vacation mood and was like "Screw it. Monday Mama can deal with this.  Vacation Mama in da house!" It was for an after school pizza party.  A fundraiser for a student in his class who has been out for some time dealing with a health crisis.  My kiddo loves pizza.  He likes his classmates.  Despite having autism, he enjoys looking forward to a party.  So I'm all "Hey dude, look at this thing going on for Thursday.  Doesn't it sounds like a hoot and a half?  Maybe like a hoot and three quarters?"

WRONG!! I could not of been more wrong.  It was like I was new here or something.  I might as well as suggested would you like to have all your nails trimmed. (You're probably thinking "Doesn't she mean nails pulled out?"  If you are, you probably haven't tried to give an autistic kid a mani/pedi. Get back to me on that sport after you're done drinking.)

Anywho, back to the monster meltdown over daring to suggest he may enjoy eating pizza with his friends for a good cause.  Anxiety is really a heartless bitch.  There really is no other way to say it.  His panic over it was epic.  Parties can't happen at school. (Which is kind of bullshit because it's grammar school.  They have parties for ALL THE THINGS!)  He can't stay after school because he will miss the bus.  Mind you I had just picked him up early from school the Friday before so we could get on the road.  (Remember, Vacation Mama was all "Let's play hooky!")  There was no explaining it.  No social story that was going to talk him down. The kiddo hath spoken.

My husband was like "Babe, forget it.  This is NOT a thing to push for." and I knew he was right.  In the grand scheme, an after school pizza party.  It wasn't worth it.  We can't even mention it in the house without tears.  So many tears.  I am not medicated enough to deal with his anxiety over this.

You know what sucks though?  Thursday morning, I can betcha my son will be quick to rattle off that he's going to it.   Even though I have RSVPed no. Then I get to deal with a meltdown over the fact that I was trying to prevent a meltdown.  It's a meltdown within a meltdown. It's like meltdown inception.  I cannot win.  Here it is Tuesday and I'm already mentally preparing myself for Thursday.  Tuesday Mama is going to the wine shop later.  She knows Thursday Night Mama is going to need a big bottle of Pinot Nior.

I just got back now from his little recorder concert.  As some parents may know, the recorder is an instrument invented by Satan that all third grade music teachers like to spring onto parents.   Up till now, my kiddo has always enjoyed performing any kind of music.  He's really rocked it before.  Today, well it looks like anxiety crashed the party again.  He cried and scripted the entire time and because of it, so did I. (Well the crying.  Scripting lines from various Real Housewives series really wouldn't of worked here.) I couldn't get to him without making a fuss.  His teacher pulled him out for a bit but that made it even worse.  Damned if we do, damned if we don't.  I barely held it together walking out of the school.  My husband said bravely "On to the next thing."  He's right again.  Really, all we can do is move forward. 

I can't help it.  Sometimes this really just sucks.  I hate that I can't stop his anxiety.  I hate that it seems to consume him.  I hate that sometimes, despite all my best efforts, I still can't help him feel safe and secure.  I resent the way I feel because I know there will be so many times where his autism will absolutely amaze me.   Right now though, I'm just having a very hard week celebrating his neurodiversity. 

Tuesday, May 13, 2014

I want a do over.

I've been sitting on this post for over a year now, too afraid to click publish.  Then I thought, "Oh what the Hell?"  I took the time to write it and I hate it collecting cyber dust bunnies. So here goes nothing.

I want a do over.  I don't want another kid.  I just want to get a time machine and have an honest to goodness do over with the one I got.  This is one of those hard truths of autism parenting that I wrestle with a lot silently because 1)Never gonna happen so why dwell on it? 2) It kind of insults the progress he has made and what he is all about.

I want to go back to the babyhood time.  I want to be blissfully unaware of the road ahead of us.  I want to just go around thinking that eventually the sleep deprivation will end.  I want to believe that he'll potty train soon and I'll be done changing wet sheets in the morning before I have even had my morning coffee. (Followed by mid morning coffee, lunch time coffee and coffee all the other parts of the day to keep my eye lids up and open.)

I want my kid to be on the same level playing field as other little kids his age.  Sometimes I forget that kids his age do all sorts of stuff that he can't or simply won't do.  I mean that's good and bad.  Good, when he still calls me "Mommy" and wants to hold my hand in public.  Bad, when I see a bunch of kids all doing some sort of game that kids his age do and he's still pretty content with the same Thomas the Tank Engine trains they probably abandoned years ago. I want to not sit there thinking "Oh those kids must be really advanced." because I have no earthly clue what a kid his age is suppose to be doing at this age. 

I don't want to have to know about the alphabet soup list of letter combos for all of this. ASD,ADD,SPD,IEP etc.  I just want to buy him Alphabits cereal and have him actually repeat the sounds I would say to him when he would sit in the high chair as a tot.  Not just stare at me and chuck them at the dog.  (OK, he probably still would of thrown them at the dog.  Damn, that dog kept the floor around that high chair clean.)  I don't want him to start saying some words and lose them like he did.

I don't want the functioning labels because really, they make absolutely no sense.  Not in our case anyway.  They are way to subjective.  Yeah, my kiddo can hear the musical notes played on a guitar and walk over to the piano and play the same ones there but he can't tie his shoes.  So where do I put him?   People tend to freak the Hell out over the idea of labels but at the same time we do need some descriptive words here.  I don't have an idea of what to do instead.  I guess they are here to stay.  Maybe someone will come along and design a new look for the label. ("Same Great Autism taste.  Now with less stimming!)

I would love to not look like a helicopter parent.  I want to not go on a recon of places before we have been to them to map out possible safety issues.  I'd like to just show up.  How novel.  Did you know some parents actually get to just drop their kids off to birthday parties and sports practices and THEN go back later for them?  I KNOW!  Wild right? I would love to just chill at a beach but my kiddo is making a bee line for the ocean. Never gonna happen.  Some folks actually bring books with them to read.  Fascinating.

I can want my do over.  I can have these feelings and be sorry for having them at the same time.  They can just coexist in my mind.  Sorry but they do.  I can want me to go back and have those moments of pure ignorant bliss combined with the knowledge it is coming.  That maybe I will catch it sooner.  Then maybe I can make my peace with it a little faster.  I wouldn't mind a day filled with some easier judgement to handle.  Like who cares that I didn't feed him homemade organic baby food.  He's ate. He's fine. New Mommy smugness seems like a walk in the effing park compared to what is being thrown at me now.  At the end of the day, the other babies didn't care what I did even when the parents did.  Right now, someone with autism could be reading this and be hurt or even angered at my words.  I'm sorry if I caused you pain with these words but my feelings are valid.  I am allowed to feel my pain just as much as you.

I can't help myself for wanting a do over.  Maybe I'd just savor those first few moments a little more.    Maybe I would be a little more of a relaxed parent instead of obsessing on brands of diapers and other dumb stuff.  Maybe I'd hug him a little tighter.  Maybe I'd sing him one more verse of "Ba Ba Black Sheep" while he slept in my arms.

Maybe I'd buy stock in Ore Ida fries had I known how important they would become to us. :-)


Wednesday, May 7, 2014

God Save the Queen

When life is overwhelming, I often look to folks I admire for wisdom.  Yes, some of these folks are other parents and autism bloggers I love.  My greatest go to source has always been more royal.  I'm not talking about that old British lady with a crown that's on the pound note in England either.  I'm talking about real queens.  Drag queens.  You see a guy in a dress and a wig.  I see a woman that took what life handed to her and recreated herself while wearing fabulous shoes.  Seriously, my dream advocate at an IEP meeting would be RuPaul.

"Two tears in a bucket and fuck it" The Lady Chablis

Damnit if that is not the best mofo advice you will ever need as you wade these parenting waters.  How much time are you going to waste on the could ofs, would ofs and should ofs?  What will all this crying actually do? Not much except puff up your eyes and leave your nose all red. Not cute!  If I want my kiddo to succeed in life, I have to help make it happen.  I have a vision of a look, I got to take the materials in hand an put it together.  I got to show him how to do the same.

"I'll read ya to filth" Jujubee 

Hey I don't go looking for fights but if you come looking for one honey I will be removing my earrings and let me tell you about yourself.  Want to throw some pretentious judgement my way?  You have not seen the side eye shade I can throw.  It's really easy to hide behind a computer screen and make grand claims that you do it better.  I'm betting though most of the smack talk wouldn't happen face to face.  Take my advice, what you see online isn't always as it appears to be.  Look to the source.  If you don't even know the person, does it matter?  Do you know them? Ask yourself do you need them? If they aren't bringing anything to the table other than a loud mouth full of hate, put your purse on that chair and say you are saving it that seat.  In the words of my favorite queen Bianca Del Rio, "Bye Queen,  I'll help you pack."

"And let them eat it." Latrice Royale

Here I am.  Here's my kiddo.  This is it.  Lump it or like it.  He works very hard.  I want him to always feel proud of what he can accomplish.  He is fierce.  He is fabulous.  He did so much when more than one at the start said he wouldn't.  To the one EI therapist who told me he may never express himself or learn in a classroom, BITE ME!

"If you can't love yourself how in the Hell are you gonna love somebody else? Can I get an Amen up in here?" RuPaul

Really, that speaks for itself.  He looks to me.  He will pick up on the emotions I am giving out there. How the heck can I teach him confidence if I don't show it?  I want him to love himself.  Modeling is key.  I want him to be okay with who he is and comfortable in his skin. He will always deal with anxiety.  I know that is part of him but I don't want it to consume him.  I know my anxiety will only feed his.  I have to remain calm so he can see it will be okay. 

"Unless they paying your bills, pay them bitches no mind." RuPaul

Oh you have issue that I take my kid to feeding therapy? Are you paying for it?  Didn't think so.  I shouldn't give my kiddo medication. This concerns you how?  You don't like the fact that he is NOT on a GFCF diet.  How is that your problem? You don't like the fact that I use humor in my blog and page in order to deal with the daily stress that is this life? Point your mouse and click on www.STFU.com.  This is us.  This is what we do. 

Now pardon me as I sashay way over to this plate of fries. :-) 






Wednesday, April 30, 2014

Pack your bags. We're going on a guilt trip!!

Waiting for the Kiddo to come home.  I'm on the front steps flanked by my dogs on high alert.  I click "shuffle" on my music and sit back to do a double dog belly rub while I gear myself up for the next shift of Kiddo wrangling.  Our pool was opened today and I know I will find myself in a heated debate about going into our unheated pool.  I wonder how fast he will wear me down with his perseveration.  Despite it being a whopping 46 degrees, I know just saying it's too cold for swimming will not appease him.   I sigh and close my eyes a moment while listening to one of my favorite Tori Amos songs, "Crucify".

"Got enough guilt to start my own religion." 

This line made my eyes pop back open.  I've listened to this song since I was 18 but today it might as well been the first time I had ever heard it.  It really slapped me upside the head.  Forget about swimming in the pool in my backyard that may have icebergs in it.  I am constantly treading water in a ocean of guilt.  It's exhausting, trying to stay afloat.  Sometimes those seas are rough too.  Other times, it's not so bad.  I mean, I'm still very much aware of it but it's kind of like chilling on an inner tube on a lazy river with a cold beer in hand.  You make the best of what was given to you and just go with the flow.

You know the part that gets me the most?  The enormous amounts of trust required.  His trust in me and mine in him.  It's a real balancing act.  Just the other night we all went out get a pizza at a popular local place.  His idea actually. Not having done in a while and kind of thrilled by the spontaneous nature of it, we decided to do it.   Of course, the entire population of New Jersey decided to go there too.  Resulting in a crowded waiting room filled with a 8,238 people (give or take)  and a bored hostess that informed me that it would be a good half hour wait.  In autism time, she might as well said ten billion years.  My husband and I looked at each other in complete fear.  Stay and risk a public meltdown for waiting?  Or try to get him to leave now to go somewhere else and still of course endure a public meltdown over plans gone wonky.

I started explaining to the Kiddo how long it would take.  That we had to wait until all the other people went first.  While I could tell he was annoyed to wait, he was damned determined he was getting his mofo pizza.  The husband shrugged his shoulders and handed the kiddo his smart phone to keep him busy.  You know what happened?  He did great!  Yeah, he scripted a lot about getting his pizza but he did just fine.  He even managed to charm a few of the older folks around me as my boy is quite the gigolo with the "Grandma" crowd.  (He likes a cougar!)  Eventually they yelled our name and we happily ordered our food.  A meal that contained no "safety order" of fries by the way.  We all ate the same thing!  How about dem apples?  Or Pizza, in this case.

Ask me if I fully enjoyed this moment of progress?  Nope.  I mean, kind of, sort of did BUT (and there is always a but) all I could do on the ride home is think "Why didn't I just trust him to be able to do it in the first place?"  The guilt seeps in.  Granted, what happened that night was a perfect storm for a mega meltdown.  In the past, it would of gotten ugly and that place would of been put on that list of places we can't show our faces in for quite sometime and when we do, tip well as to get in their good graces again.   Maybe it's a little maturity. Maybe it's some of the communication progress he's made.  Maybe it was pure motivation on his part to get some of their kick ass pizza that he was able to script his way through an overcrowded loud sensory nightmare and just cope cause he know the end result was PIZZA.  I mean it's really good pizza.  Pizza motivates me all the time.

But why didn't I just trust him?  He trusted me when I gave him the information that there would be a wait but eventually we would be seated.  For crying out loud, I didn't have to cook or clean any dinner up and I couldn't even fully enjoy that!  Nope, got to schlep around this guilt everywhere I go like Sophia on the Golden Girls always walking around with her purse.

Maybe all this hanging around my head was the reason why today I relented and said "Fine!" and let him go in our pool after school today.  He tells me he's a penguin all the time anyway.  Let him go in and see if he can be trusted to realize that the water is entirely too cold. He got as deep as his knees and ask me to "Turn the warm time on please!".

Threw my hands up in the air and said "I can't buddy but we can do something else. "

So he turned and got out of the pool.  I guess he trusted me. That and he knew I'd make him a side of fries inside, where it was warm.  :-)


Wednesday, April 23, 2014

Autism Q and A

It's interesting the sort of mail and comments I receive here at French Fry Inc.  Some of it's very complementary.  Some, thought provoking.  Other's, well, makes me wonder why their Mamas didn't teach them any manners.  Honestly though, the trolls who manage to stumble out from underneath the bridge they are living under long enough to steal their neighbor's Wifi long enough to send it really don't bother me.  Heck, getting hate mail means I've arrived as a writer!  Thanks for validation ya knuckleheads!

I thought I would use this post to answer some questions and address some of the more questionable feedback I have gotten. Here goes nothing! Oh and if you hate this post with every fiber of your being so much so that you feel compelled to write me, realize it will be future blog fodder.  Enjoy!

"Why do you pretend to be normal when your kid clearly is not? I mean if you're kid is in special ed, there's nothing normal about that?"

Thank you Captain Obvious for noting my autistic child is indeed in a special education program.   Here's the thing though, this IS our normal.  I'm not even going to use that "Normal is a setting on the dryer" quote here Honey.  Cause all that's going to do is remind me to go fold those sheets I have in my dryer.  You see, there is always a load of sheets to be washed and dried.  That's my normal.  The nice bonus of having to wash them as much as I do is I rarely actually have to fold them to store them.  I'm usually grabbing them right from the dryer to replace the ones that need to be changed.  In fact I'm thinking of turning my linen closet into a small office seeing as my linens are anywhere but in that space.  Back to this whole pretending to be normal.  What else would you like me to be?  Wailing and gnashing my teeth? I won't do that. I'd smudge my lipstick. 

"Why do you sometimes post or tweet things that have nothing to do autism?"  

Simply because I can.  Yes, autism can be all consuming but I occasionally like distract myself from it.  Call it a sensory break for Mama Fry when I tweet Bianca Del Rio and tell her how much I enjoy her Judge Judy impersonation on RuPaul's Drag Race.  If you want the all autism experience, move on by.  I can't give ya what you need.  If you are ever wondering why your relationships with others might be slipping, it could be the "all autism, all the time"conversation topics you choose that could be doing it.  Trust me, I've been guilty of it myself.  Mix it up a bit.  You'll be glad you did.

"Are you autistic?  Sometimes you sound like you are when you talk about schedules and your quirks and stuff.  Why are you hiding it if you are?"

Am I?  Are you?  Does it matter? Well I guess to some it must.  I will be completely honest.  I have no idea.  I will say that I am sure that the quirky apple didn't fall far from the tree.  There are many behaviors that my son does that I completely understand.  Eye contact?  Pfft, who needs it? Mine sucks.  Sensory issues?  Got them in spades baby.  Schedules, you betcha!  Love me some nice orderly schedules.  You should see my phone.  I got lists galore.  I'm just a hair away from a sticker chart.  Also, some of this normal I spoke of early, it just rubs off on a gal.  If you live it, well, you live it.  If some of the things I do make sense to me and my kiddo and not to anyone else, that's all that matters.  If I have a feeling that makes me understand where my kiddo is coming from than that is a gift.  I don't care what you call it.  Someday, maybe I will pursue that more but I'm 40 and my priority is helping out the kiddo I live with.  I can put that on a shelf for a bit.  I can't shelve his needs now. So sorry, the mystery continues.

"You're too sarcastic.  Autism is a serious issue.  You're making jokes of it."

You noticed? Well Hell's Bells, I thought I was doing a great job of hiding my sarcasm. Let me get this straight. I got to hide my kid, my life, whether or not I'm autistic and my sense of humor.  Gee, that's a lot of stuff.  Guess I could put it in the above mentioned often empty linen closet.  I'm not even going to apologize for my humor Sweetie.  That's just me.  I spent way too much time crying over all things autism and I am sure to cry another rive of tears over it.  In the time between, I will laugh.  I will laugh till my sides hurt.  Being miserable makes the day a Hell of a lot longer.  I'm sorry you're not in that place yet and maybe you never will be.  Too bad though, I would of shared a side of fries with you. 

"Does your kid know you're writing about him? I'm tired of seeing parents write about their kids." 

Yep, he does.  Well in so much he knows there's this awesome page on Facebook that makes his Mama pretty happy with a really cool picture of French Fries and a Yoohoo on it.  There are some topics I won't touch. I think I've been pretty good about that.  I really have no advice to you other of if you don't like them, don't read them.  Go scroll on Buzzfeed.  I'm sure you'll find a amusing quiz to find out what character on "Friends" you are that can occupy your time.  I'm guessing you're not a parent.  Maybe if you become one, you will see the appeal.  Or at least understand why it is we like to talk about our kids so much.  I can't help the fact that he's freaking awesome.  Go ask your mom what she thinks about you.  Say thank you when she says the same or she might not give you your allowance this week.  Or worse, the password to your house's Wifi. 

"When I read you, I feel less alone." 

Thank you.  I do too.  Let's spoon.  OK, that got weird.  Yeah, social skills.  Add that to the list.  :-) Yeah, that's why I still write.  I need to feel less alone too.  We all do.  I'll suffer the negative comments for ones like that. 

Seriously, let's cuddle and nap.  I know you're tired. 




Wednesday, April 16, 2014

Scenes from a Newsfeed

If you are reading this it's most likely you brought here because somehow you found me on social media.  Probably Facebook but I am branching out more on Twitter.  (Although between you, me and the lamp post, I mainly use Twitter to cyber stalk reality "stars".  I will not rest until I get a tweet back from Jeff Lewis of Bravo's "Flipping Out" and I now consider "RuPaul's Drag Race" contestant Bianca Del Rio my new BFF as she actually tweets me back!)

As a stay at home mom, social media is my virtual water cooler in a cyber office.  It's been that way since the Kiddo was a baby and quickly learned my neighborhood became a ghost town once everyone jaunted off to work and the buses rumbled off with the kids.   That day would be stretched ahead of me with nothing more than some tummy time with the Kiddo and the latest Baby Einstein DVD.  (Hi! I'm Julie Clark, founder of the Baby Einstein Company.  You think your kid is only going to watch these DVDs for a little while but I know I will be your ASD child's DVD crack for quite some time.  Enjoy the show!)

I embraced social media for the much needed adult conversation that I needed in order to survive that first no longer working outside of the home year.  When autism rolled on in, I grabbed it tight and swore my undying love to it.  Sometimes I need the touch stone it provides.  Even when I want to take said stone and throw it at someone.

I won't complain about the "Vaguebooking" status updates.  My eyes gloss right over those anyway.  You burnt your lunch? Oh well, the office microwave generally stinks to high heaven to begin with, I doubt your offering made it any worse.  You'll live.  Your favorite sports team is playing tonight and you are excited about your bracket or pool or whatnot?  That's nice.  Are you getting mini hot dogs in puff pastry to serve?  Tailgating is important folks.  My cousin just downloaded 93 new pictures of her vacation to the Dead Sea?  Don't mind if I do.  I scroll through all those pictures and then some.  :-)  My girlfriend took a picture of her new sandals?  Honey! Those toes are cute. What's that nail polish color?

As the years go on though, I am still shocked when some stupid little update or picture pops up that kind of slaps me upside the head with a moment "Oh will my kiddo ever do that?"  So my escape from my reality becomes once again my reality.  Facebook won't give us that "dislike" button, so I doubt the special needs social media filter will be invented anytime soon.  I know I shouldn't be all doom and gloom but I am also a realist here.  I don't think there will ever be a shot of him driving his first car.  I'd be happy if he just figured out how to play Mario Kart by himself without needing my help.  I'm not sure prom will happen but I never say never.   He's pretty cute and seems to be a big fan of the ladies at his school.  One of the moms of a student told me her daughter likes him because "He doesn't say much but he's a good listener."  Yeah, that's right.  This Mama is raising that boy to be a good prom date someday.  I'm really hoping someone sees that.  Dammit, I want that prom picture up on my newsfeed with my kiddo in it.  I also want him to want it but I can't really control that can I?

I never thought I would be taking pictures of the things he types in school.  Not a few years ago.  I never had the hope.  So maybe.  He's not writing War and Peace but man he's got some serious stuff floating around that head of his.  I love how he comes home from school and hops on the computer to journal.  Like a little Doogie Howser M.D.  Granted most of the enteries are about DVDs he watched, vacuuming and our dogs but it's a start. It's important to him.  It's things that make him happy.  That makes me happy.  You bet your sweet ass I'm posting those brag worthy pictures.  If I can type a "Yay!  Good for your kid" under your shot of them at T ball, indulge me my kid's love letter to the Easter Bunny.

All I know is my cyber tribe lives in my computer.  In order to chill with my flappy happy clan, I have to balance the happy and sad feelings I feel when I see an update that leaves me momentarily speechless.  A cyber fist bump to you if you are reading this in the middle of a sea of prom pictures or graduation announcements and you're biggest worry this week is just making it through this Spring Break without a trip to the ER or having to replace your tenth copy of "The Polar Express".  Come sit by me at my lunch table.  Make your way through the "typical" crowd.  A side of fries awaits for you.

Wednesday, April 9, 2014

Autistic or with Autism

"Is he autistic or with autism? Seriously, what do you call him?" 

Well mainly I call him by his name, which I'm not sharing here.  You have to trust it's a really good name.  I think he's like the only one of his whole school that has it too and it's not anything weird like "Apple".  Although now that I think of it, perhaps naming him "Potato" would of been more our speed.  My husband calls him "Champ" and when I'm not calling him "Kiddo" I'm calling him "Monkey Butt" because it makes him laugh.  He then calls me "Hey Monkey Butt!" back, picking great times to do it like out at the grocery store or at a therapy waiting room.  What can I say?  We're a little odd in our humor here.

Anywho, I'm guessing you really mean do I say my son with autism or my autistic son.  Honestly, I use both when talking about him.  Back and forth.  All over the place willy nilly.  Why? Simply because I can and I really don't know what his preference is regarding it.  I'm not even sure the Kiddo knows he is autistic or has autism.  We certainly don't hide the word around here and seeing as he is an only child, the autism way is the only way we roll. 

I used to use the whole "person first" language pretty much exclusively.  The great bonus feature of starting this blog is I've gotten to talk to a lot of folks with autism! Imagine that! Time and time again, I see that many of them prefer the term autistic.   Who am I tell them "No you can't call yourself that." It's quite possible my kiddo might be thinking the same way as these other autistic adults.  Or maybe not.  I'm not really sure.  I mean for all I know my kiddo might identify solely with just being a french fry eating fiend.  I know his autism doesn't define him but it sure is a part of him.  He could go a day without eating a french fry(although it would protested loudly, I assure you) but there is never going to be a day where he won't be autistic or with autism or however you want to say it. 

If my kiddo comes home one day and says "Mama, I prefer it THIS WAY!" then that's the way I'm probably going to continue to do it when talking about HIM.  I'm not going to deny him that request. I'm also trying to make an effort as I get to know folks with autism or autistic what it is they prefer.  I know!  That's a lot of extra info to pack in my rapidly aging mind but to me, I think I can do that.  If I can remember that a person prefers their nickname to the name on their birth certificate, this isn't much different than that.  Maybe this is my Irish (or with Irish decent) background into play here.  We are forever naming our kids one name yet call them another. (No seriously.  We do this a lot.  My mom found out her aunt's real name at her aunt's funeral.  Someday I'm hoping my mom might tell me my real one!)

All I know is I'm just trying to honor everyone's request.  Autistic or with Autism.  I'm sure I'm going to muck it up.  I'll piss someone off.  Know that it comes from a good place and correct me with what you prefer if I screw it up.  We'll move on and order another side of fries.