Ugly Side of Caregivers | Ow how I wish they’d bring functioning labels back. People just don’t understand. And I’m SICK of people trying to compare. …

October 24 at 9:29 AM

Keri Waterworth

Ow how I wish they’d bring the functioning labels back. People just don’t understand. And I’m SICK of people trying to compare. Ie ‘my child has autism, I totally understand what your going through’ erm no you don’t susan, your saying this to me, whilst your child is happily holding on to your hand asking for his favourite packet of sweets! You do not get it, you may have a child with HF autism but you will never know what ‘I’m going through’

Another thing I hate, when I say, my son has severe autism, the amount of people that shut you down and say how wrong I am for saying severe. As apparently autism is autism. I won’t compare my child to a HF asd child, it’s impossible, not only that (may only be me) but I get jealous seeing all they can do.

Sorry rant over….

Laura Shea

Laura Shea I have no shame in saying “severe, non verbal”. Even that could be broken down. But it is what it is

Katie Wahl I tell folks that my daughter has the level of autism people tend not to discuss.

Ethel Rucker A very WISE response to the ” naysayers.”

Kortni Fournier I agree with you 100%!! It’s so frustrating!!

Keri Waterworth I’ve said, low functioning, level 3, severe and they all get pounced on. I just don’t get why it’s hated. Any disability can have different levels.

Jimma Lee Page Weber I so agree with you. I get jealous too. I don’t believe the high functioning kids should be called autistic

Jess Martin Completely agree

Yvonne Sidwell 100% agree!!!!!💕

Tena Vance-Havican My son is 28 and yes he has SEVERE Autism! My holes in my walls from head butting will agree, his broken nose will agree, his being non-verbal/communication skills will agree, his needing help in the restroom will agree, his screaming for no apparent reason will agree.

Kimberly Ann Bond Agree

Trina Fenton Duggan My 35yr old has severe intellectual disability with autism…I find it hard when people with straight autism don’t get the battle. Labels place people in pigeon holes. If I had a child with HF autism I’m quite sure I wouldn’t want a label…once labelled it’s forever

Tricia Kollie I do the same thing. I say severe. Probably because a lot of people think of rain man when I say autism. If I say my son has autism I get oh is he good at numbers or art. Ummmm no he’s great at meltdowns

Tena Vance-Havican Lol mine could enter the Olympics for meltdowns

Dawn Rendes I say mine has severe autism , it’s not the autism you see on tv . It’s a the kind that ruined the whole family

Betty Cupp There are different levels of autism where my son belongs????? He can talk ask for things he wants, but can’t carry on a conversation or tell you who did what

Betty Cupp Rain ma , did not seem like what I know, I think they missed a lot

Julie Garcia I agree. People don’t and won’t understand unless they spend time living our life. I have the same rant more often than i would like but it can be so irritating. 
I just hired a new attendant and she asked if the was any research she could do before starting. I said no. You will only understand my son’s autism by spending time with him. She has worked 2 days and as with other attendants is totally shocked. It isn’t at all like what you read about or see on tv.

Laura Shea It’s great that the new person wants to do research! You could guide her to read about visuals, sensory issues etc so she has that knowledge in the back of her head as she works with your son.

Julie GarciaLaura Shea thank you. It was nice that her first day my boys OT was here and explained to her in detail about what she does for him and how all things have to include sensory needs.

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3 thoughts on “Ugly Side of Caregivers | Ow how I wish they’d bring functioning labels back. People just don’t understand. And I’m SICK of people trying to compare. …

  1. Tim Hutton says:

    I’m high functioning. I own that I am. My issue with this “community” is that there isn’t a damn community. You all sit here and screen shot posts from parents who have it extremely hard. You sit there behind your computer having insane amounts of judgment all because “you are the voice of the autistic community”. But you’re not. You don’t know these children and adults. You know yourself. You know your friends. You know your loved ones. But you DON’T know the struggles every single person has in life.

    What’s absolutely shocking is that you don’t see that these parents have to set up their children’s entire lives. They have to fight for support. For help. Set up their child’s life for when the parents pass away. They have it harder than my parents ever had it with me because despite my struggles I KNOW I can make my own decisions. I KNOW I have my own voice that I can actually use to advocate. I know that I am blessed to be able to do these things. It’s a wonderful thing when someone with severe autism learns to speak and feed and dress themselves, but let’s be real- that’s not everyone. Some of these children and adults have multiple disabilities that prevent those self efficient milestones from happening.

    You should take a good look in the mirror and self reflect on the judgement you have against people. I know I’m ashamed that you think you’re the voice for our so called “community”.

    Of all things you could’ve reached out and OFFERED HELP to those who are struggling. Help them find resources since you’re oh so mighty with knowing it all when it comes to autism. But I don’t see that happening. Instead you exploit people who need support by taking screenshots out of a private group. If you want to raise acceptance then you need to HELP others. Not shame them.


  2. Jamie says:

    You have taken the private messages of some of the most wonderful and selfless caregivers and put them up on your blog to publicly shame them for VENTING. You could not walk in their shoes for a day, you trash of a human being.


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