28 Things Parents of Children with Autism Want You to Know


autism, kids with autism, high functioning autism

As a Parent, I get frustrated, feel pain, disappointment and anger when people label my children or think/speak before really understanding who they are.

autism, high functioning autism

28 Things Parents of Children with Autism Want You to Know

*So many people have the wrong idea or a misconception about children with Autism.

I think sometimes it’s worse with kids that are high functioning, because they are VERY border-line. Which is why it’s called a spectrum.

  • It’s huge: from low-end to high-end.
  • A range of levels.
  • Each child is different.
  • No two children are the same.
  • You meet one child with Autism, you’ve met one child with Autism.

I know this first hand because the twins- Zion and Ziah are vastly different when it comes to where they stand on the spectrum. I asked several of my friends from my Autism Support Group- The Starfish Throwers what they would want others to know about their child with Autism.

This is what we came up with- 28 Things Parents of Children with Autism Want You to Know

  1. He is completely innocent, he loves more than he will ever be able to express, probably more than any of us will ever experience in our lifetimes. He is my smile when I cannot find my own.
  2. They are innocent victims and they understand everything you say and do. They can read your body language even if you miraculously don’t say something rude. Extremely intelligent and always underestimated!
  3. He wants to be your friend, but sometimes he doesn’t know how to show you. If you listen he is very smart and wants to share everything with the world.
  4. Just because my child has been diagnosed with Autism, does not mean he is unable to be a productive member of this society.
  5. Just because he has been diagnosed with Autism, does not slap a label on who he is and what he can do.
  6. He is still a unique individual.
  7. You can’t “catch” Autism. It’s not “cooties.”
  8. Don’t judge a book by the cover. Don’t judge them just because you may catch them in a “melt down”/having an off day, etc.
  9. Don’t be afraid to ask questions.
  10. He is NOT cognitively impaired. He is actually quite academically advanced. Just because he can’t talk doesn’t mean he doesn’t have something to say.
  11. He has worked harder than most people I know, in just the short time of 8 years of his life. Just to do things that we take for granted.
  12. Every time I have questioned or doubted myself about his care, I have been wrong.
  13. Every time I think that Autism has gone away, it slaps me in the face.
  14. He is a good boy, with a good heart, that is sensitive and needs love just like anyone else.
  15. If you hurt him on purpose, I will come down on you like you have never seen.
  16. That just because you may not understand him that doesn’t mean he can’t understand you. His intelligence is not to be undermined.
  17. That he wants to have friends to play with and that he is very smart if people take more then ten seconds to judge him.autism, high functioning autism, kids with autism
  18. That she can not help it if she eats funny, or as some people say “like an animal” and she can not help it that she gets frustrated so easily. She is not a bad kid, and if you take time to see past the bad stuff you’ll find one of the most adorable sweet girls you will ever meet.
  19. Good heart, VERY literal, very unsafe but loves the world and everybody in it. Not a bad kid, just needs to be reminded of taking turns and that some people like to talk about other topics, also very smart and people should talk to him when he is there not us.
  20. Although very verbal, he is still autistic. There is a misconception that autism means non-verbal. This is totally not true.
  21. They march to their drummer and may do things for no rhyme or reason. If you go with the flow it makes life easier for all .
  22. We as parents have learned to pick our battles carefully instead of taking on every battle that comes about.
  23. Just because he can talk, ride a bike, etc doesn’t mean that he is any less autistic.
  24. He has worked really hard at accomplishing those things. I’m sorry that he isn’t plastered with puzzle pieces so that everyone can see that he does look autistic.
  25. My son just wants to play with everyone nicely without being teased, hurt, or bullied. And I’m sorry if he swiped you phone and bypassed your security code to play you games, its his thing.
  26. Our Babies have to work harder to get their words across and have patience with them.
  27. That even though they may not be able to express their brilliance they have a lot to contribute.
  28. That even if my daughter appears like everyone else she marches to her own drummer we may not always understand what she is thinking but it is important to respect her process.

See something we missed? Please feel free to chime in!

If you’re reading this, does it change the way/perceived children on the Autism Spectrum?

Chime in- I want to hear what you have to say! And thank you to all of my Mommy friends for giving feedback and coming up with this list. Let’s continue to make it grow!

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11 Comments

  1. February 15, 2014
    Reply

    It’s been suggested more than once that my difficult child is on the spectrum. I’m afraid of it. I know on one hand that it means nothing because he is who he is, but it’s something that I just don’t know about and can’t research away.

  2. March 19, 2014
    Reply

    No one but only a mother could come out with these points about Autism. I hope after reading the post people can be a little more generous towards these innocent kids who just need a little more love and care than other kids 🙂

    • April 1, 2014
      Reply

      Thank you Payal– that’s what it is all about.

  3. July 15, 2014
    Reply

    This is beautiful and I plan on sharing it liberally. I have a few very special kids in my life who are autistic and have other special needs as well. It’s so important that we recognize kids for the individuals they are instead of the expectations we place on them!

  4. January 30, 2015
    Reply

    I love this list! The one thing I hear that still makes me angry, “I’m sorry” .. .why? My daughter is perfectly healthy, happy, clever.. She has interests, she can communicate in her own way. She just so happens to have autism. I’m not sorry for that and I don’t think that anyone else should be either.

  5. April 24, 2015
    Reply

    I love this list so very much and I think my favorite part is where YOU actually mention “I think sometimes it’s worse with kids that are high functioning, because they are VERY border-line. Which is why it’s called a spectrum.” This is absolutely my personal experience! My son is very high functioning and has made amazing progress since his diagnosis three years ago BUT he still has unique quirks and does things that may seem “weird” to others. It is hard for him to fit in with other kids on the spectrum but also hard with non spectrum kids. He is definitely smack in the middle and it is tough!

    • April 25, 2015
      Reply

      Thanks Marcie. And I agree. If I was given a dollar for every time someone said, oh they look normal, they don’t look like they have autism, etc… I’d be rich by now! I sometimes think being in the middle is tougher. You have to fight for everything!

  6. July 29, 2015
    Reply

    This is totally awesome! I particularly love number 15. Hell hath no fury, like the parent of an autistic child. It is particularly great because as parents of autistic children, we will go the extra mile for our children and create great blogs and sites such as this. These types of insights help not only us as parents, but those who think they are in the know, but really don’t, to see the day to day that our children and we live with. This is great! Keep up the good work!

  7. August 18, 2016
    Reply

    I want people to know my son doesn’t have a special ability like the character in “Rainman.” He isn’t an autistic savant. There are no shortcuts to getting to know him — no labels that will simplify the task. However, once you know him, you’ll realize it was worth the effort. Nothing in life has come easy for him, and that makes him a more compassionate, funny, and interesting human being.

  8. Pam
    May 7, 2017
    Reply

    Thank you for your list. It is very helpful. I am a grandparent of a 2 1/2 year old that has recently been diagnosed. I will share this list with his parents.

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