10 Things my Autistic kids wished you knew



Written by me, Rob Gorski (Lost and Tired) and dedicated to my amazingly beautiful children. 

  1. I’m sorry I have fits but I’m not a spoiled brat. I’m just so much younger on the inside than I am on the outside.

  2. I’m easily overwhelmed because I see and hear everything. I hear the lights hum and clock tick. Everything is so loud it makes my head hurt all the time and my eyes hurt from all the bright lights.

  3. I’m not stupid, I’m actually very smart. I just don’t learn the way you want me to. Please learn about Autism so you know how to help me better understand what you are trying to teach.

  4. Please don’t be mad at mommy and daddy because we don’t come over for holidays or birthdays. They really want to go but I don’t do well at another person’s house. It’s too overwhelming for me and they know that. They don’t go because they love me, NOT because they don’t like you.

  5. Please have patience with me. I try really hard to make good decisions but I can be very impulsive at times.

  6. Yes, I have Autism but that doesn’t mean I’m less of a person because of it. If anything, I’m actually more of a person in spite of it.

  7. My house might be messy sometimes. It’s because my mommy and daddy spend all their time trying to find new ways to help me or teach my brother to talk..

  8. Just because I can’t talk doesn’t mean I don’t understand what you are saying. My feelings can be hurt just like yours.

  9. I wish my mommy and daddy knew how much I love them. I have a really hard time with emotions and I don’t always like to be touched. But I love them more than anything in the world, even more then my Lego’s.

  10. I know I can be frustrating but don’t tell me I won’t amount to anything because I have Autism. If you love and support me I WILL do great things in my life in spite of my challenges.

http://www.youtube.com/watch?v=uFyN4zsR1nY

I recently put together this little movie based on the above post. They are basically the same message, one is in written words and one is spoken word. 🙂

If you liked this piece, please read My Broken Heart or Thank You For Judging Meyou may appreciate these as well.

 

Please feel free to use this piece for educational purposes or to help spread Autism Awareness. Please DO NOT use this for personal monetary profit. I also ask that you provide proper credit and a link back to my blog (if you post it online).

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Anonymous

Piece of unsolicited advice for those of you raising A kids … send this list, or you child’s equivalent, to your friends and family. It’s an awareness issue, and we are as unaware as you were before your child was diagnosed. Don’t get pro active in educating friends and family, and you will likely create interactions that create hurt feelings, leading to relational rifts. This is what happened to me, and no amount of trying will help at this point. Had I been even remotely informed I likely would not have reacted badly to violence against my own kids.

We are human, we will make mistakes when navigating in the dark. Fail to educate us and you run the risk of eliminating the relationships that could best help your child. Don’t get over the initial misunderstanding, hang onto your grudge, and deny your child a shot at supportive family who are actually willing to help, but shut out due to ignorance.

Lost and Tired

Well said.. Very well said….

rjones22

great list. when my kid was in the hospital the stupid nurse told my son she didnt see that he needed adderal since he didnt work or go to school. he is 21. it was just one insensitive comment. she didnt know that he wants to go to school and he wants to work but he doesnt because of his uncontrolled bechets diesease. i am glad i wasnt there when she said it as i would have had to stay calm while she was hurting my kids feelings. even though he doesnt have cancer he was on the cancer floor. she didnt know he didnt have cancer which makes it worse that she said it. i know my son is very sick but thank God no cancer (cause he recovered) but what if he had cancer and was depressed with his situation, there was no way ever her comment could have been helpful. people need to kept there mouth shut saying negative stuff like that.

Keegan Campbell Sluis

Hello, I work for a company that works with children with autism and other special needs and after reading this I had a good laugh with the accuracy of this list. It make take a little more time for them to learn new skills but once they get there, there is nothing more rewarding then the satisfaction they receive from completing the activity.

Monika Mielcarek

Love you Niki

ljalexander777
ALEXRINDERER

I never have been able to put into words what people with Autism go through and this just fit it perfectly. Graduating in May as a Special Education Teacher I hope to remember these top 10 things when I have students with Autism in my classroom. I find them to be so interesting because I can never understand how they are feeling. Thank you for being such a strong role model for your children and to others who have loved ones with Autism!

JonGilbert

Beautiful!  The same comments my own kids would make!

lostandtired

@JonGilbert thanks Jon. 🙂

RethaGroenewald

Awesome post. This is beautiful.

amautone1

This also is beautiful.  I tweeted it and will post this on my Facebook fan page.  I have a brother in law (in his 50’s) with autism.  I don’t blog about him as much as I should.

lostandtired

@amautone1 thank you

Donna Moritz

Wow Rob you just had me in tears. I was a speech and language therapist for 10 years and worked with children who have autism and I also have friends now who have children with autism.  My husband is a chiropractor and he was just talking to me yesterday about some of the amazing changes they are seeing with kids and diet and just with time spent with them (one Dad at home after losing his job has found that his son is jumping ahead in leaps and bounds) so your comments about parents and messy houses and not turning up to social engagements struck a chord with me.  thank you so much for writing this. I have saved it to share with some special friends and health professional colleagues.  Beautiful!  and I am glad I have discovered your blog!

phyllis

This is truly beautiful.  I am sure that many people who deal with Autism more closely can benefit from your blog.  For me, I learned a little bit more about the struggle.  Thank you!

lostandtired

@phyllis thank you 🙂

Michelle

This is so correct it made me tear up. I sent it to all my other 4 children to hope it will help them UNDERSTAND our son with autism. THANK YOU!!

HeatherESedlock

As stated many times by yourself and others, of course this list isn't going to describe every child/adult with autism. Sometimes, they may be on the opposite side (i.e. sensory seekers), etc. But I would love to see one change–the removal of the phrase "in spite of"… He (your son(s)) may be more of a person BECAUSE of autism. Go ahead-say it. 🙂 I had wonderful friends after middle school. They loved me just the way that I am (still friends today) and not IN SPITE of my autism–but because of it. Because it made me into the person that I am. You cannot separate neurology from personality. I am autistic. And I'm awesome–because of it and other things 🙂

lostandtired

@HeatherESedlock Very well said. Thank you so much for sharing . 🙂

kat13

Great video!

MarcelaCFSaiffe

If you are so kind, I would like to do a spanish voice over of a translation of this video, My english have an accent in voice over but me and my friends can help giving it human voice in english and spanish,  so it will be easier tfor viewers.  reach me on twitter @saiffe  I have asperger syndrome and I would love to help the cause  =)
 

sher

thank you for sharing this video.

lostandtired

You're very welcome
 

MikeMcLarty

THANK YOU!

Diana-Ian Powell

this is amazing !

pinkangel

you took the words right out of my mouth…..your ten things are so true to me & i always struggle putting things into words,explaining to people how difficult life with autism is..so il b sharing,thankyou xoxox

whynotfathers

I wish that we could push this through triberr. then I could reblog it. 🙂 You say things that we all wish we could say as eloquently.

@MostlyTrueStuff

So amazingly and perfectly put. Thank you for putting into words what our sweet kids cannot.

Iliana Hernandez

I cried when I read this. You said it all. I have a 17 yr old son with autism. You summed it all up in 10. You are an inspiration. Posted it to my FB page to raise awareness. Luv your blog. God bless you and your wife and your 3 beautiful sons. I believe that God will help find a cure for our children and all with autism. If I don't ever get to see it, I hope my son will. Thanks.

Paula Cid

Enter text right here!

Data

It’s rather scary reading that and nodding in understanding – both from my own perspective and from that of my little boy. But it does need to be said so that those who without experience can begin to understand. Maybe it’ll even get a point through to those who bully simply because “that kid’s different”

Heather McCuish

Thanks for sharing, this post inspires me to continue working on helping families, dealing with a child or adult with autism.

Claire

All great points. Will share.
My recent post The Magical Classroom

Nola

This was so lovely, my son suffers from autism. And I sometimes struggle to understand it! THANK YOU XXX

autismpodcast

Thanks for sharing Rob. Always nice to see another father reach out and share their jouney.
My recent post Episode 98 | Wretches and Jabberers

Alyssa

Beautifully done, thank you!

momma

Don't let those comments upset you. My son is so clever but he to is younger on the inside. His choice of toys are " baby toys" all the other children his age play with things my son is not ready for yet. That doesn't make him not clever, it just makes him a little younger on the inside. I am sure in time he will catch up but for now he is so busy studying and enjoying the same toys he played with as a baby. Not only is it his choice in toys but his interests. I am not saying he is not smart, I know he will get to where he needs to be. People should not be so quick to hate and judge. As a parent with a child with autism we should all support one another and realize each of our children are different

jessica

Reading your post really helped me a lot…. as a mom of a mildly autistic little girl (with a developmental delay) I see in her a younger child too. I do not have a support group or children her age to interact with so i felt so alone but thanks to Robs(lost and tired web site) strength. I see people like you who i can look up to and learn from THANK YOU SO MUCH I DON'T FEEL ALONE NO MORE

kate

I too hate the word autistic. My son is a woonderful and bright and creative and smart child that happens to have autism

Kate Myers http://chicagoautismmom.blogspot.com/

Lost_and_Tired

It really is just a word and adults with Autism prefer to be called Autistic.

To me it\’s simply a discriptive term used to describe the condition. I call my kids by their names.

We really need to try and be open minded because Autistic is not degrading in any way. Some are more comfortable with one word over another but we need to be tolerant of everyone preference. Most importantly, we should defer to what our kids prefer when they are old enough to know what they want.

jessica

Thank you for all the information in your site . My 2 1/2 year old little girl was diagnosed with mild autism last november and i have no support group aside from her three teachers that come into my home Monday ~ Friday… It helps havin someone like you as a power of example and that iam not alone… thank u again

Jennifer Livingston

I love that I found a blog from a father's point of view!
I have 7 yr old twins and my son has Autism, my daughter is borderline ADD.

Aklupshas80

If you dont like what he's saying, dont read his blog. He's not asking for your professional or "motherly" opinions. He's trying to write because it's how he vents. He's trying to say hey, we have problems, and we're still here, together. Like I said, If you have all kinds of things to say cuz you're a profesh, or have experience, xyz, dont.read.his.blog. Why dont you create your own?

sharon

Wow! great! thanks…also……#11: please don't not invite my siiblings to something just b/c of me. If anything, they need MORE chances for special outings with friends and family because chances are they spend a lot of extra time at dr's appointments and therapy with me.

Catherine

I am a home daycare provider and ECE and I will be sharing this with my daycare families, friends and fellow teachers and care providers. My daughter is not autistic but she does have a speech delay and my son may or may not have ADHD, so many of these things apply to both of them. I have also worked with many children during my 18 years in the field for which they also apply and thank you for speaking for those who cannot do so for themselves.

Lily

This really touched my heart. As a mother of 4 kids 5 yrs, 3 yrs, and twins who are 2 1/2. My oldest and one of the twins were diagnosed to Autism… your list really put our lives in a nutshell.. amazing! keep up the great work I'll do my part and spread the word and educate people about autism.

Lost_and_Tired

Thank you so much for your support and for sharing a bit of your story

Trish

how I wish someone had written this list when I was a child and being asked 'what's wrong with your brother?' Even now I get asked that. Thank you now when someone asks I can refer them to this article

Claire

I work in pre-school, where I am the SENCo (Special educational needs co-ordinator) I currently work one to one with a 3 year old boy who has autism, his younger sister looks as though she may have it too. Most of my staff don't understand the condition, would you mind very much if I printed off this list (minus your photo) and put it up on our board in our setting to remind them to think a bit more before they say something?! Thank you.

Lost_and_Tired

I would be honored. I\’m glad it is helping so many people.

Elizabeth P

I love the ten things,I totally realate as we also have a child with autism.my son Jacob he is my world.again thank YOU.may God Bless You and your family.

Mom

Rob, I was looking through your links and read Lizzies – I know some of your experience – I have 2 boys with chronic illness and for years didn't sleep more than a couple of hours at a time. I had to be the strong one, always, but that led to all kinds of physical ailments that I couldn't explain or deal with – mostly based in inflammation (which it appears from her list that Lizzie's are). When we are overwhelmed but unable to process mentally what we are faced with it shows up in our physical bodies. If there is any way to encourage Lizzie to get good sleep (I had to be hospitalized at one point just so I could sleep) and to do something physical she enjoys so that she is physically exhausted (not from running after the kids – although if you took them to a local track and played chase games that might work) she might find that her pain is less. Also there are some meds that do work for migraines (but they wont give them to you for long term) – she might be able to use them periodically just to get a break – lorazepam is a good one…I am not a big proponent of meds, but sometimes they do help. I'll be praying for you all!

Beth

I feel this was beautifully written, it touched my heart! my son is 16, but he communicates and acts out like a 2 year old. this is so hard to explain to people who just look at Chris and say "he looks fine to me, just spoiled". Autism is so many different things, coming together in so many different ways, that it is impossible to pigeon hole our kids into a definition. With this post, you hit directly at the heart of where my family is every day! thank you , and God Bless!

Susan

I would like to create a school for autistic children…any advice?

Dorit

Grew up with an autistic cousin back in Germany and have been working with adults with developmental disabilities here in the states, I understand everything you write. I know how much different therapies can assist with developmental and behavioral issues and hope that your children will or already receive services that help support them as well as you. I wish you and your family the very best for the future and will think of you often as I continue to support the aging population with autism and other dev. dissabilities. Thank you for posting and making others aware 🙂

Lost_and_Tired

Thanks alot. Thank you for helping those in the community and thank you for your support and kind words. My kids are receiving as much therapy as we can find. We have about 12 reoccurring appointments per week 🙂

guest

"I don't like being called 'autistic'. It's like calling someone with cancer "cancerous". I have autism, but I am not autistic. Thanks.

Lost_and_Tired

Thanks for sharing that. It's interesting because most people prefer the term Autistic. However, everyone has his or her own preferences. Sorry if I offended you as that was not my intent. However, it can be like a navigating a mine field when choosing words to use.

Ms. Mews

I was an Autism advocate and behavioral specialist before I became a mother and later learned my child is on the spectrum. Also, as an Aspie, I'm horrified at the misinformation about Autism Spectrum Disorders put out there. You wrote:
1. I’m sorry I have fits but I’m not a spoiled brat. I’m just so much younger on the inside than I am on the outside.

WRONG. This is misinformation. Autistic children aren't 'younger on the inside". What an insult. Way to promote misinformation as well as keep the negative stigmas going about an already misunderstood illness.

Lost_and_Tired

First of all, you are entitled to your opinion. However, you are very clearly wrong in this case. For starters, you need to carefully read the title, 10 Things MY Autistic Kids Wish You Knew. The key word there is "MY". I'm speaking about my children, who are developmentally delayed.

My oldest is 11 but is about 3 or 4 years old emotionally. So he is much older on the outside than he is on the inside. This is VERY common amongst kids on the spectrum, and that's a fact. When my son gets upset he responds like a toddler would.

1. I’m sorry I have fits but I’m not a spoiled brat. I’m just so much younger on the inside than I am on the outside.

This was meant to help people put some of these behaviors into context. I would NEVER presume to speak for all people on the spectrum, but I know MY kids.

You need to remember that every child is different, as Autism is a spectrum disorder. Autism can present itself in profoundly dynamic ways from child to child and adult to adult. I would like to think that as an Autism advocate and a person on the spectrum yourself, you wouldn't be so quick to judge.

What I stated was relevant to MY children and won't always reflect what others on the spectrum experience.

You demonstrated one of the huge problems we have in the Autism and special needs community. I don't understand why some people are so intolerant. People think that their experience with Autism mirrors that of everyone else and that couldn't be farther from the truth.

Everyone is different. Every person is affected in a different way as is every family. Instead of attacking me, perhaps you would get farther ahead by allowing for the possibility that my experience and my children's experience is different from yours.

I'm sorry if I come across harshly but I mean no disrespect. However, you come across in a manner that does not help anyone. You are combative and judgmental. I stand behind this post. You don't have to agree with it but it wasn't written for you. It was written for MY children…..

mom2greatkids

Lost & Tired, I totally understand & agree with everything you are saying… dealing with a 35yo Aspie & an 8yo Aspie, I have to look at it from the eyes of a parent & from the outlook of a partner who has learned that as a parent I don't know everything I think I know… Yes you said "MY KIDS" but understand that as an Aspie, Ms. Mews is going to point out the one thing that she feels is incorrect, not that others on the spectum don't fall into what you are saying, but your site is popular and it does give others the misunderstanding that All ASD's are that way… WE know that all ASD's are unique and different, but those who don't may take what you wrote as ALL are the same… You shouldn't be upset that she pointed out that one of the 10 things can be misinforming, she didn't pick it apart… She just wants people who read to understand that that isn't always the case…personally, if an Aspie who is stickler for detail's took it as a generalization, I'm sure most other people will also over look the "MY KIDS" part.

Ms. Mews

"…I mean not disrespect…you are combative and judgemental…"
Did you take a mental breather between writing those two sentences? Pot, meet kettle.
I haven't spent all of my adult life working professionally with hundreds of adults and children on the spectrum with all ranges of disabilities to NOT know that no two people on the spectrum are alike. That's a stupid assumption to make, and that basis of your argument fails.
I appreciate that you're teetering between your title of "…Things MY KIDS wished you knew…" and your last statement of "It was written FOR my children…" but, you should realize that you've posted this information on a popular blog and therefore spreading misconceptions.

Ms. Mews

For example:
Rob Gorski, you're acting like a five year old in your response.
Did I insult you? How did that make you feel? If someone tells you your kids are acting like toddlers, is it okay for them to say that because they are developmentally disabled and only function on the level of a toddler emotionally?
Seriously, if someone told me my kid acted the way he did because he's 'younger on the inside', I'd tell them they have a gross misuderstanding of his disability, regardless of his emotional functioning level. And if I thought my kid acted that way, I'd get on with figuring out why and not try to pigeon hole it as a result of his disability.
And thanks for calling me intolerant. I guess since I'm intolerant AND an aspie, I secretly hate myself. Brilliant.

larry fishon

i totally agree with you and she should go back to school and learn to read she obviously wasnt very good at the comprehension part .and i wouldnt want her help with my child,
just saying

Lost_and_Tired

I appreciate the support but we need to stay respectful. Please…

mom2greatkids

i must agree with Ms. Mews on #1… I have an 8 yo Aspie, & my best friend of 22years who is now my boyfriend is an Aspie, i was Quite insulted last week by a therapist at my older child's High School, she was asking me about my relationship & how it affects my kids, she asked me if I get tired of never having adult conversation & what I get outta my relationship if it's like dealing with a child… That's Insulting, giving that his IQ is off the charts, I don't understand the conversations my boys have with him because I AM NOT THAT INTELECTUAL! & for it to be suggested that because he's Autistic that I'm in a relationship with a child (mentally) is insulting/& misinformed… If nothing, my MAN has helped me better understand & help my son, because HE has the experience that I as a MOM can never have… and my 8yo Aspie's therapists have pointed out that my son has been more open & cooperative since he's had an Adult Aspie to look up to!_

Lost_and_Tired

I don't see the problem. I'm talking about my kids, not yours or anyone elses for that matter……on my blog. I wasn't insulting anyone and you have both taken my words way out of context and turned them into something that they weren't intended to be.
It is a fact that some kids on the spectrum are emotionally younger in age then they are chronologically. What exactly do you think a developmental delay is?

Acknowledging this fact doesn't reflect poorly on anyone. It's simply the nature of pervasive developmental disorder. The developmental delays may be more serious or severe in some than they are in others but they are often there. I'm sorry that you find this insulting but it is most certainly not misinformation.

I have heard from countless families that have said they experience the exact same thing with there child. This post has been viewed 10's of thousands of time and you are the only one to say they were offended.
Again, I wrote this about my children because that is what MY family experiences. If you take it in a way other than I intended than I have no control over that. I wish you the very best and we'll have to agree to disagree.

Thank you for sharing your opinion, however, there is a difference between opinion and medical facts.

larry fishon

once again i have to agree

Kay

I have to wonder why Ms. Mews is so defensive too. Not everyone is going to have the same perspective, not only about their situation but about others as well. If she disagrees with your post then she should start her own blog to express her viewpoint and not make someone else's opinion a cause for battle.

allison

er, I am not offended by being called emotionally younger- I view it as a compliment. I like that I haven't lost the ability to get really happy from really simple things.

Trevor

1. I still have fits but express them in art. 2. Still overwhelmed by lights, noise, movements. They still scare me. 3. Personality quirks still exist, they call me ecentric.4. Still antisocial. 5. Still strongwilled.6. Bah. 7. Hasn't changed. 8. See 6. 9. I love everything equally, even lego.10. I had/have autisim. I live my life in my own way. It's hard accepting change, but change is enevitable and I need to embrace it's even though it's hurts me like fire.

Dee Brake

sharing AGAIN 🙂

Brienne

This is a lovely post. I have an autistic daughter and my battle with cancer was particularly hard on her for a lot of the reasons you list here. I will never forget the day I cam home after a long hospital stay and a huge weight loss (about 40 pounds). She wouldn't hug me because "she was afraid of that skinny" but an hour later she came out of her room with a photo of us before I got sick. She said nothing but handed me the picture and gave me a hug. One of the most beautiful and powerful moments of my life.

Amy

Than, not then. Otherwise very touching

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