Advice for autism parents
Granted lots of people who talked about autism online are, of course, members of the ASD community there is rather a large kernel of truth in her comments and certainly it is an excellent question. Indeed we thought it would be useful to have it as a discussion blog as part of our “Autism and Parenting” series.
The aim of this blog post is to share some of the responses we received to Barbara’s question and also to give our other readers and opportunity to give their suggestions or indeed just vent!
“My favourite – your child is so belligerent – no he’s autistic please learn the difference!” from Shaneen clearly struck a cord with many of our readers!
As did Nikki’s “Some people get it most don’t! My favourite comment “well he looks normal! ” oh sorry are they suppose to have a sign on their fore heads or something!!! The latest one ive got from a member of the family is “he’s growing out of what ever he had before I think hes correcting his behaviours so he doesn’t have it now! ” (my son has aspergers and dyslexia and adhd). Yay hes cured then…..? Are they real?”
Holly got some real rubbish from a healthcare professional “Lol. I love how a psychiatrist tells me what to do with my son. And she has no kids. Only book knowledge. Today she told me to take him to the ER for a meltdown. Umm. Lady that’s not the answer. He’s 13. And I know what I’m doing. Just get him a counselor like I’ve requested five times. His old Dr moved to England. He had kids. He understood. I called her boss and said I’m done. New Dr time. Give me someone that doesn’t fear Autism. That’s what frustrated me. She acted afraid of him. He would raise his voice and she would tense up. Umm your a psychiatrist. More training needed. Of course he raised his voice. You asked questions about abuse he received from school. Duh.”
Chris was stoical in his approach “You just have to learn to let it wash past you…… Nobody really knows it unless they live it..”
Kelly shares “my fav is actually “I work/ed with them, I know what ur talking about but ur wrong” so what you spend an hr at a time with any one child and you go home and sleep? talk to me when you havent slept much for a month or more and have been screamed at for making the pb+j in the wrong order, or you ran out of the fav food (even though you offered to run out and get more right now)”
Juliah has been told something my wife and I were told ” I see a lot of “autism didn’t exist 50 years ago so its just an easy excuse for bad parenting!” Obviously they’re uneducated because autism has been “around” for over 100 years! Also many parents of asd children also have children not on the spectrum and the behaviours are so different. Surely if we are bad parents all of our children would “misbehave”? I dont really blame people with no experience of an autistic child for their ignorance, because before our children were diagnosed werent we equally ignorant? If I saw a child screaming at its parent because it couldnt have something it wanted, or heard that a child in one of my childrens classes had behaved in an awful manner, I would have just presumed they were naughty, spoilt, needed a bit of discipline (not violence btw) never really thinking that there may be other issues going on. Schools do not inform parents which children are autistic, adhd, have a problematic homelife etc and which arent. So when someone had picked on your autistic child we may just presume they are a nasty child when actually, they may have struggles of their own. I know ive rambled on a bit but the point im trying to make is noone is educated in everything and we will all, at some time or another, judge a person even though we dont know what their story is. I really dont mind what people say any more, as I know the truth. My boy has such struggles to face each and every day, but he is the most loving, affectionate, comical, clever, amazing little boy. People may judge because he has been violent and say its my fault, but only my family has gone through this struggle, only we know all the efforts we have gone to to get the best for, and out of our child. NOONE ELSE MATTERS!!!!”
But for Patti it has been a nightmare “I have a daughter that is 24 and having alot of problems right now she was aggressive now she on meds still has melted downs a few times a day. The neighbors dont like us they called cys , health board and now we have to move out we rent. The one neighbor told us that all of them cant believe that we are keeping her instead of putting her away, really need friends that understand thanks”
Della says “My personal favorite: “They just need a good whack on the bottom”. Since my child had massive sensory overload in all of his senses and can only wear certain materials and can’t stand going barefoot outside, I’m sure a nice stinging whack isn’t really going to solve a meltdown. If possible, make sure they are in a safe place and let them have a melt down. This worked for my child and may not work for someone else s but he has learned how to self-regulate and as a young teenager he rarely has meltdowns.”
So what has been your most irritating bit of advice about autism? How did you respond? What did would you suggest to others told some utter rubbish.
You can share in the comments section below.
Thanks very much in advance!
PHOTO LADY hi I know it’s difficult if you don’t know and not all parents will automatically tell you if there child has autism, I think the best thing for you to try is if you see a child behaving this way ask the parent quietly what is wrong and if there is anyway you can help make the situation easier. Yes my son has autism and add so I have had the dirty looks and tuts, now I just ignore or if in a situation that I can I explain . Doesn’t always work but I try and I’m sure you do too. Very good luck.
I’m not a parent of autism, but I had an experience today that really threw me for a loop. I’m a youth sports photographer and while taking pictures today I noticed a young boy having a meltdown. He was kicking and punching his mother and throwing his bat towards one of my fellow photographers. My first thought was not autism, I just thought he was a brat and I was concerned hat he was going to damage one of our cameras. While trying to line his team up “tallest to shortest”, he was hitting and grabbing the hat off his teammate. He was crying and I was thinking his mom might pull him out of the group shot since he was so upset, but she didn’t? She just crouched down behind him, trying to hold him up as he flopped around swinging his arms. I went with it and took 3-4 pictures, but then tried to adjust the children to get a better photographic arrangement. I saw that the boy was again about to punch the teammate next to him and I put my hand between the boys to block the blow. The mom of the abusive boy started screaming at me, “How dare I grab her child with autism!” I told her I was sorry, it was a protective reflex. I just couldn’t stand by and watch the other child be smacked again (side-note: I never grabbed the boy. I just blocked the other boy from being punched yet again). She said she didn’t accept my apology. I apologized again and said it was wrong of me to intervene. She stormed off angry and screaming, “She couldn’t stand by and watch me grab her autistic child “. I in actuality do not feel as though I was wrong. Had I known he was autistic before I took the picture, I don’t think my reaction would have been any different. Why should he get a pass to be violent to another child? I’m asking you, the autism community, shouldn’t she have not forced him to be in the picture if it was upsetting him so? I feel very unsettled that she was so angry with me and so unconcerned for the welfare of the other children on the team. There are challenger sports leagues for special needs children. I’ve photographed many and have been praised for my patience and compassion, while attempting to get the best photograph possible. Any thoughts about this would be appreciated. I do not profess to know what you deal with day to day. I raised three healthy children, I’m an elementary school teacher, and a freelance youth sports photographer. I love all children and just want to be better educated on an appropriate response should I ever be in this situation again.
Yes, I get it! I try to think about who I am with, and inside think, they have NO idea!
Leon
I am the proud mother of 3 amazing children. My youngest son, (9) Deonte has high functioning autism. But that wasn’t always the case. He was diagnosed at around 2 when he regressed almost every milestone in his life. He was also born premature and had several seizures before that. None of my family knew what autism was, and we’re all convinced that the Dr’s had it wrong and he would ” grow out of it”! He also has add and sickle cell trait so he has had his share of problems. But after lots of therapy he started walking at around 3 and a half! And started talking again too! I cried for both! 🙂 His father couldn’t handle the fact that he had problems and left but my boyfriend of 8 years took over and they are amazing together! 🙂 Deonte has to try very hard every day to overcome challenges! He still does a lot of repeating and tip toeing. We still have a long road a head of us and there will always be challenging issues but I love him more and more every day! He has opened my eyes to another world; my problem is that I’m over protective! He wanders and has done so a few times already! Problems with bullying as well… anyways sorry for rambling but just wanted to give a little of our back story. My question is: how do you let go some and let them try to do things on their own after doing it for them for so long? I have a huge problem with trying to help too much! 🙂 ty
My beautiful and charming 4 year old son was diagnosed with ASD at 2y and 8 month. When I told our family and friends one of them responded ” you let him watch too much Tv and that Ipad” then another older aunt suggested that “maybe its somtheing you ate when you were pregnant” My son has a twin sister who is not on the spectrum, when i said that she kept quiet but rolld her eyes.