Iv never posted before but I need to vent/rant I hate the word severely autistic not because my son is but because who the fu$# even knows what that means seen as how every 2nd child is autistic sometimes I wish he had been born with Down syndrome or cerebral palsy I mean shit at least with those things you don’t nearly have it or are close to having it YOU EITHER DO OR YOU FU#%ING DON’T END OF STORY I’m sick of other mothers comparing their naughty kids who apparently are on the spectrum to my son they have no idea !! I’m of the belief that most kids that have been diagnosed on the spectrum are in fact just badly behaved because their parents can’t parent !!
Yvonne Sidwell It’s good to have a vent. I like the word severely autistic although I’ve moved on to using profoundly autistic. I need that word otherwise people assume my kid is just quirky. My kid was diagnosed at just 3 years old… no doubt Autism and SLD. The spectrum is too wide, I’ll stick my neck out here but when I was a kid (I’m 52) there were kids who were just naughty or just shy or just not academic. I was going to put thick but changed it to academic. Now parents go running off to private clinics in the U.K. begging for a diagnosis of something. I think sometimes it’s the doctor who is at fault who end up just giving in and at a loss say it’s autism.
Annette Spence I have been in groups where it seemed, actually they wanted a diagnosis of “autism” as if it is an honor to be in our group. One woman I knew had her son diagnosed and I don’t think there was one thing wrong, she just wanted to be with the autism mom…See Mo
Timothy Engelskirchen What severely autistic means to me is not being able to speak at all. Every waking moment he is having to be in motion just to stay regulated and not go from underrespomsive to hypersensitive with any one or many of his senses at once. I have 3 children and homeschool my youngest like i did her siblings birth to 9. Actions speak louder than words and even though my son is severely autistic and does not speak that does not mean that his actions do not communicate. I am daily wondering if i should just be homeschooling my son where we is happy 95% of his day or continue to send him to school a – very good school for special needs children in my area. On his 3rd day i am told he is crying real tears each day at 1:30. My son has an extremely high pain tolerance. Is very sensory seeking and does not know danger. He is still small for his age but can hop a 6 foot fence in 2 seconds. I get people calling the police on me when i go into public with my son because i have to have him in a transportation harness for the bus. On top of his autism he also has epilepsy. 3-5 seizures a week lasting 5-12 minutes not controlled by medications. We are ‘waiting’ for DNA testing. He also does not sleep at night without the aide of clonidine. With out that i wouldn’t be sleeping at night and didn’t age 2-7. It is a shame that people’s judgements of your severely autistic child can get you open cps cases for not giving a rescue medication in public before 5 minutes. My bad for sub ranting on your post but assumptions of any form in my opinion need experience over time directly to know exactly what is going on. :
Annette Spence When my son was about four we had to enclose our entire yard with a fence, locked gate, locked windows doors, alarms etc. The family lived prison style for a long time!! It would be nice if more people would extend a helping hand instead of cutting tongue!!!
Annette Spence I’ve used the word “severely” and I hate that I have too. With every other kid being diagnosed I’m always ready to defend myself because everyone thinks I shouldn’t complain or have issues when my son is like “The Good Doctor.” He’s not, you know what I’m saying!! I read about a disorder call Childhood Disingenterative Disorder (?) that sounds like my kid. Thinking I will quit saying autism and give him a different name. It is frustrating and pissy for us parents who deal with so much more than the people with autism online complaining about autism. I’d love for my son to say one word, to complain!!!
Kristen Wilson Omg yes exactly !!! I have had someone actually say “hasn’t that guy from the good doctor got autism “ I’m left like ummm yeah but my sons future doesn’t involve him being a doctor !! My sons future looks more like non verbal not toilet trained cognitively the age of a baby for the rest of his life !! Makes me so mad 😡
Timothy Engelskirchen My family shut down around my son. He isn’t invited to his aunt’s ever.
Annette SpenceKristen Wilson my son is 17 and still pees the bed. He cannot talk, requires assistance with everything and still today doesn’t ever notice a car coming at him on a road. He is 6 ft tall when he has a behavior meltdown it is really bad!!! I haven’t …See More1Manage
Timothy EngelskirchenAnnette Spence my son is 10 now wears size 7 pants weighs about 50 lbs. It took me and 4 other adults to hold him to be sedated for his EEG nodes to be applied to his head. I am working out daily to keep up with Loki. He also is not potty trained and likes to ‘dig’ pretty severe to me 😮
Kristen WilsonAnnette Spence I know what you mean I live in Australia and a news channel the other day did a report on a “autistic boy” been given a assistance dog to help him well the report certainly didn’t show a boy with autism at all it was the biggest lot of BS iv watched i found myself hating his mother who I don’t even know but the though of her child been given that kind of opportunity when all his problems seem to have been is she couldn’t get him to go to bed without him having a tantrum/meltdown
Annette SpenceTimothy Engelskirchen when my son was about 6 he had his first stay at psychiatric pediatric hospital. He decided to throw himself and kick in the middle of the hallway, it took five pretty big men to pick him up and escort him back onto the wing. As I keep saying, no one will ever understand what we really go through or the decisions we have to make. Leaving him at this place was such a hard decision, I thought my heart would break. That staff would laugh when they would see me peaking through the door. It was about an hour away and I would show up 4 times a day to check on him. They were great and pretty much spoiled him. His psych doctor was with us for every stay, even when he went back at 11, 14 and 15. Believe the next few stays I took advantage of the downtime.
Shawntee Howard My son is 9 5 ft tall and over 100lbs, cannot verbalize or do any other thing that a high functioning child can do. I find myself explaining to ppl the difference between high functioning and severe. There is def a FINE LINE BETWEEN THE 2. Its nearly impossible to get someone who doesnt live our daily lives to understand what it takes to raise a baby in a grown mans body. Its very frustrating i have gotten to the point that i hate ppl especially parents of higher functioninv kids because THEY WILL NEVER UNDERSTAND THE TRUE MEANING OF WHAT SEVERE AUTISM IS
Keri Waterworth I agree. Other day I seen a post in a asd group, and it went along the lines of, my son got his diagnosis today, he’s well made up because his friend is autistic and he wanted to be lik him. 😳😳 I nearly spat my brew out when reading it
Annette Spence Is there an emoji for ughhh!!!! Ridiculous!
Keri Waterworth I know I was like ‘wow’ like asd is a trend 😢
Julie Garcia This is true. I have a son who is severely autistic and a son with down syndrome. With DS it is easy to get services. People understand more why he acts the way he does.
With my other son i have to explain them i get the general response of so and so’s kid has autism and they he/ she is able to……..
Kristen Wilson Exactly Julie Garcia i meant no disrespect when I said I would have preferred that my son had DS and of course as a parent it’s not easier if he did but i feel people’s comments would be so different as there is no comparison if your child is normal
Laura Shea That is why this page is for people like us. Don’t read or compare other pages. It will make you crazy.
Annette Spence You are so right! I didn’t realize when I joined the autism acceptance group it was people with autism saying to accept autism and sharing their thesis on the ins and outs of autism. This group will piss you off!!
Zoe Cannon I use the term ‘Severe Non-Verbal Autism’ for my son otherwise people haven’t got a clue. They still don’t have a clue even with that term, until they meet him I guess. I think Autism Spectrum Disorder is like the Atom, at some point they will split itand a million different diagnosis and names will come out of that. Maybe not in my lifetime but at some point, as you can’t possibly believe that two kids with the same diagnosis can be so vastly different, it’s ridiculous.
Margie Goldberg Cohen For my daughter, I usually indicate that she is severely to moderately Autistic, mostly nonverbal with Apraxia, aggressive/self-injurious behaviors, and PICA. All I think that DSM-5 or whatever revision(s) are mainly for insurance purposes.
Rachelle Cox My daughter has both Severe Autism and Cerebral Palsy. I get what you are saying because some people do tend to have a little more sympathy when they see my daughter in a wheelchair, because it’s more obvious that something she cannot control is wrong, which wouldn’t be the case if she was only on the spectrum.
That being said, having obvious physical markers of disability has its own drawbacks, people are sometimes cruel in a very different way because my daughter’s CP disability is very obvious and public.
I get what you mean about the severe title though. I get frustrated by the romanticism of mild or moderate Autism. It may be very helpful and empowering for those on the higher-functioning end of the spectrum, but it makes things harder for kids like ours. I wish they had never made it all “ASD” and kept the different categories (like Asperger’s, Classical Autism etc)
Destiny Bessery I use it because I have two boys who are night and day. Just using the word autism wouldn’t describe my younger sons struggles enough. He is no where near the cognitive, functioning level his older brother is.
I understand though why it can be hurtful to people when they use the words high functioning and severe though. I 100% get it.
But in my home comparing my two kids together just from one diagnosis would set them up for failure for services.
Unfortunately they’ve decided to toss it all into one diagnosis vs creating some type of barrier so people can easily distinguish it. If I say level 3 autism they are like what’s that? What’s the difference between the levels? Then it’s a hell of a lot more explaining than I have time for.
Shawntee Howard My son was diagnosed before the terms changed, his classification was severe classic autism i miss these terms they explain more in drpth rather than just saying ur childs on the spectrum. No hes way the fuck off the spectrum
Anna Hillier I prefer telling people my daughter is severe, because of i just say autistic people assume she can do all sorts of things. I agree that it is way over disgnosed. How can a high functioning autistic kid even compare to my girl. How is it they are both autistic, when my daughter can’t do even close to what high functioning kids can. Makes no sense, I think it needs a different name
Stephanie Jones Schreiber My son is 25 and let me tell you….I wish that the DSM5 never happened. It was so much easier for people to get before all the DXs were lumped into ASD. I still use Severe Autism as opposed to Level 3. Frankly, I have been known to tell people to kiss my @$$ when they know someone with autism who does this or that (things my guy can’t or doesn’t) or doesn’t do this or that (things he does)
Laura Shea How about “oh he has Autism? What’s his thing?, you know math, maps, dates….” He doesn’t have a “thing” you asshole. He just stopped eating wood chips. 😊
Stephanie Jones Schreiber Right?? My son’s “thing”. Is ignoring stupid ass people
Yvonne Sidwell How about he can eat a bar of Imperial Leather soap in one sitting! That’s my son’s thing
Timothy Engelskirchen I have been following the DIRfloortime method for Loki since age 4. We do floortime daily all throughout the day. It took a solid 4 years of intense 1 on 1 and 2 on 1 seasons daily for me to see the most progress. www.whatisfloortime.com And www.icdl.com are great resources. Before when he needed something he would just melt down regardless of what he needed. Now as of the last 2 year’s he takes my hand and brings it to what it is he may need. He does not use PECS, he does not use argumentative devices. He wants to take me directly to what it is he needs. He has also in the last few months began to bring his 7 year old sisters hand to whatever it is he may need.ManageWHATISFLOORTIME.COMWhat Is Floortime
Kristen Wilson I know right my sons thing is to try eat or taste everything non edible !!!
Betty Cupp I know all about that, I said to my mom I wish he was another disability, she has been gone since 88 so don’t remember, but I remember her saying you don’t want that, I might have a harder time dealing with it. So it’s not easy use to be people looking. I never made eye contact that is how I handled that
Marianne Stedelin Martinez I never say severly because it seems like depending on who you talk to their perception could be totally diffrent. That being said how would you approach better parenting? Mu son cam be a handful
Kristen Wilson I maybe worded it wrong iv got 6 kids it’s my youngest who is severely autistic then my son thats up from him is and has been a handful since he was born and I’m sure if I rushed him down to the paediatrician office he would also be diagnosed no doubt on the spectrum but I would disagree with that diagnosis because I’m not ashamed to admit that me and my partner have rarely punished him for his behaviour and have allowed him to continue being a handful I just think a lot of parents are taking the easy way out to justify their child’s behaviours and wasting resources for children/adults that really need the help
Eve Chatterley This post 👏👏👏 I’m in groups who have people in arguing they are severely asd, really?? My son would have no idea how to use a keyboard he has no idea of his surroundings at all. THAT is severe asd. This is why I love this group you can rant and people actually get it. It’s the whole “oh my son has autism I know what you’re going through,” no love your child is in a mainstream school absolutely fine a bit quirky, my son will never be toilet trained as soon as his nappies off he tries to eat whatever is in there. I can’t explain to him because he has no understanding 🤦♀️drives me mad.
Katie Wahl I say my daughter has autism so intimately that it’s at a level that people dont discuss.
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