Psych Today Asks "Are We Giving Autistic Children PTSD From School?"
As schools have become "behavior management factories" what has the benefit been to students with autism - from the most severely affected non-speaking to those with what we used to call Asperger's? My youngest had the worst time of it in school, particularly when she was in high school. I spent 4 years having IEP meetings reviewing chart after chart of her "SIB" (self-injurious behavior) and AGGRESSION. The SIB was slapping or pounding her thigh. The aggression was slapping the desk. At one point, school assigned her two paras - one to work with her and one to click click data to chart. I once asked a teacher, "How would you feel if your boss took away your coffee mug as soon as you walked in and you had to EARN every sip of coffee in the morning, by someone else's chart of success? Or if your phone was taken away and you had to perform dull, repetitive, often insulting work to earn a 5 minute break on your phone?" My older daughters are 25 and 26. Their demeanors have improved since leaving school. I think they feel free to be themselves for the first time since.... preschool.
If you have begun Spelling2Communicate, HALO, assistive technology or other successful efforts to allow your son or daughter to convey their intelligence, their hopes, their thoughts, their fears, what have you learned? When I read JB Handley's book Underestimated, An Autism Miracle, one sentence in the manuscript stuck with me. So much that I influenced the final name of the book (not taking a bow, but sharing how much this impacted me.) When he asked his son Jamie how he felt about teachers who made him do preschool work for 12 years, who treated him like he was unable to learn or progress, he told his Dad that he thought the teachers had "...earnestly underestimated him..." I thought that was one of the most forgiving, mature statements I'd ever read and called JB immediately to tell him I thought it was his title.
The author of this Psychology Today article is local - I think I'll contact her.
Marcia Eckerd, Ph.D., has been working with neurodiverse clients for over 30 years. She has been appointed by the State Legislature of CT to serve on the CT Autism Spectrum Disorder Advisory Council and is on the Clinical Advisory Group of AANE.org (Autism/Aspergers Network). She serves on the Professional Advisory Board of Smart Kids with LD as well as the Community Medical Staff in Psychiatry at Norwalk Hospital. She’s written multiple professional peer-reviewed journals on the diagnosis of autism, as well as contributing to Autism Spectrum News and multiple other websites and publications.
From Psychology Today:
Are We Giving Autistic Children PTSD From School?
1) We must understand the behavior of autistic children to help them.
2) Responding without understanding diminishes the personhood, self-esteem and trust of autistic kids.
3) Providing an environment sensitive to the needs of autistic students benefits all students.
For most autistic children, school can be a toxic environment. Working on the advice of experts, school staff aim to have autistic children’s behavior conform to neurotypical expectations. The more a child is indistinguishable from mainstream peers, the more successful the school intervention is believed to be.
Disruptive or atypical behavior is labeled oppositional, avoidant, attention-seeking, rude, or simply inappropriate. Children who don’t “cooperate” (meaning engage in and respond to school-led, behavioral interventions) are often called non-compliant. The issue is seen to be the child, not the intervention itself. Autistic children are often taught that what they feel, think, or do is wrong and they should do what they are told instead. This can have a life-long impact on self-esteem, self-confidence, and self-advocacy. Quoting a student on a Stanford University panel, “It kills my soul.”
The issue of quashing self-confidence and self-advocacy is worth considering since schools expect students to “participate in post-secondary planning.” According to a 2017 study, “77 percent of autistic high school students play a very limited role or no role at all in post-secondary planning compared to 47 percent of students with intellectual disabilities and 27 percent of students with all other disabilities.” (Gillespie-Lynch, K. et al 2017)
Many interventions treat behavior perceived from the outside, without understanding the meaning or necessity for the child. The behavior is the tip of an iceberg that goes down to sensory, social, emotional, motoric, and cognitive issues the child experiences. A child who is “acting out” may be responding to internal frustration, overstimulation, anxiety, or some other distress. Plans often focus on eliminating the “acting out” behavior instead of recognizing distress. We need to support children, not single-mindedly focus on correcting behavior. READ MORE HERE.
"Psych Today Asks "Are We Giving Autistic Children PTSD From School?"
I have 3 teens with autism - 2 non speaking in a self contained classroom and 1 without a intellectual disability diagnosis. The answer to the above question, after speaking with this child is "YES". It makes me very discouraged to hear about her terrible experiences and how she was treated and talked down to as if she were severe and with an intellectual disability. Being shy and introverted with high sensory issues have been the issue, and now her self esteem and view of the future have been so broken I am not sure how to fix it. The only thing that makes me sadder is that her brothers are those severely affected children, and because they can't tell me anything I can only imagine what its been like for them. As a parent I feel as though school has given *me* PTSD after the years of IEP meetings (with lawyers) that were so fraught with animosity and tension that at one point a school therapist called CPS on me to get us out of their school by any means possible. All I wanted was to get my kids help, not Cadillac services as they like to refer to them. None of us will ever be the same, and I fear for their futures.
Posted by: CHS | September 08, 2021 at 02:51 PM
Thanks TOB.
Posted by: benedetta | September 08, 2021 at 01:20 PM
I think it's a ketogenic diet you're describing, Benedetta, and there is quite a bit of evidence to back it up as a tool to reduce seizures (https://pubmed.ncbi.nlm.nih.gov/31635247/). It used to be the case (and maybe it still is) that some insurance plans would cover ketogenic foods as "medical foods." It is mainstream enough that a doctor won't treat you like a loon if you bring it up (with plenty of published literature in hand) as something you want to pursue. An honest doctor will admit at least some of the limitations of most anti-convulsive drugs.
Posted by: TOB | September 08, 2021 at 11:45 AM
Teresa Holman
I am so very sorry. That is horrible to see him and then lose him again.
You have broken my heart. OH, may God look down upon you and bless you and your son, just pour out health up on both of you.
Those seizures just rule our life, suck the very air out of the room, taking all hope away.
We have been up against this for years , my son is 35. His first seizure was at 9 months when he received his third DPT vaccine. We started seizure medicine then reduced and got off of them by the tie he was four; still had seizures with me trying to get help; until finally one seizure showed up on an EEG at age 17. .
But just last year we ran into strep that we did not get rid of and I think - I am guessing that it caused inflammation in the brain. The reason we could not get rid of strep - even though we were on top of it, and took antibiotics; it was still there. Again I am guessing, but I think it was the seizure medicine that he had been on for15 plus or minus years. All through the years we have all kinds of different seizures; this last bunch was anxiety and compulsive unwanted thoughts.
This went on for five months, and the first day after a fast he improved. I was taking care of my Father with end stage Parkinson and I finally put some trust in my husband to do this. Of course he was scared finally - and willing to do it.
I don't know if you have tried this.
I may be using that fasting word wrong. I had to have it simple so my husband could handle it.
My son was not eating much anyway so it was easy to talk him into not eating anything after 4 or 5 in the evening, in the morning he did not eat carbs but foods with fat like eggs and bacon, coffee with butter and MCT oil blended in with a blender. Then nothing till I don't know - lunch time, and then we again encouraged more low carb choices. Now he can have carbs for lunch and the evening meal.
And N acetyl cysteine, twice a day.
Have you tried this? If you have and it has not helped, I am sorry I even mentioned it.
But I was amazed at how well it worked and how fast it worked.
A couple of days we finally had our appointment over the computer - only took months to get in, and of course the doctor - well that is a long drawn out story; of additional meds like Prozac and of of me trying to get help to get him off of seizure meds, which I finally had to grow a backbone and be fearless on that front. Short story; we have been off of seizure meds for a total of one whole year now, with no problem.
The inserts on the seizure meds says they don't really know how they work.
But if you look at the side effects or what to watch out for - like Keppra says to be careful of sinus infections, seek medical attention to sinus infections - that means to me that the medicine is damping down the immune system.
Posted by: benedetta | September 08, 2021 at 08:44 AM
Brutal CCTV recording on evening news .
Channel 4 News
Call for police to get mandatory neurodiversity training after officer assaulted 10 year old boy with autism.
By Clare Fallon 7 September 2021 Video recording of "control freak- staff behaviour " worse than Winter- bourn View abuse scandal ?
Training deficiency offered up as the same old worn out excuse?
So who is going to train the training deficiency defectives? "The Staff" looking after these kids in a supposedly place of safety during school time?
The Training for Trainers, at Glasgow University sound as though they have diagnosis labels? issues problems and difficulties tae get sorted out their own selvies ?
https//uofgpgrblog.com
Neurodiversity & Neurodivergent
What do they mean and how do they impact me as a PGR
University of Glasgow PGR Blog
Diagnostic description change from 4 Levels of Autism in 1994 to this! " a huge dis-service
to many people living with Autism , What happened to " Savant?" People with a very high IQ ?
In Lennox Castle Hospital patients medical records /diagnosis contained the labels ,Idiot Imbicile Retard ,ethical and moral delinquent ,I'm sure I might have missed a few?
Posted by: Morag Lyons | September 07, 2021 at 03:56 PM
My son is about to turn 31. I look back over his "education" with such sadness. I didn't know what I was doing, no one knew. I worked a lot and listened to the "experts" for way too many years. Eventually I gave up on all the educators and decided to try myself. I did reach him for a lot of years. I am so beyond grateful for that decision. I learned who my son is and how intelligent he is. He even took online classes for a while. We read books that were over my head. He typed beautiful thoughts, and I celebrated every word; But then seizures came with a vengeance stealing all we built. A lot of his ability to be what he truly is, is so often smothered in pain and frustration. We are still home together. I try everything and then some. I'm glad I know who he is, that he is doing all he can to be on the outside what he is on the inside. My far too short glimpse into his soul was cut short. But everyday I reach for it, and I know that he reaches back. We will connect again, I refuse to give up. The way we "teach" those with autism is all wrong. We will learn that...eventually. When those we reach, stand up and "tell" us who they are. I pray we listen.
Posted by: Teresa Holman | September 07, 2021 at 09:31 AM
I am not going to hold back.
First, get rid of most future autism cases by getting rid of ALL vaccines.
Second, home school your vaccine injured children. Most "autism" cases are vaccine induced encephalopathy.
Third, treat your child as if they are INJURED, because they are.
Fourth, assume the root of all odd, dangerous, disruptive behavior is their damaged health.
Fifth, much of this behavior is rooted in CHRONIC PAIN- often gastro related.
Sixth, get speech therapy, vision therapy, gut/diet therapy EARLY.
Seventh, home school your child so you can carefully OBSERVE his behavior and WHAT TRIGGERS IT. This also removes the horrible overstimulation that public schools subject them too. It also removes the teacher "therapy" that is based on a false understanding of your child's MEDICAL issues. They cause further HARM.
Helping your injured child is up to YOU, parent. NO ONE knows your child or cares for them like YOU. This takes time and total self sacrifice....but it will pay off. Gastro and speech issues are HUGE. If you can help them with gastric pain/constipation and help them to COMMUNICATE either with EARLY PRIVATE speech therapy or the spelling technique used by JB and his son (for those who cannot talk.) This is how you transform your child. Much of their sometimes horrible and injurious behavior will fall away if you can improve these areas. Many of these kids also have supersensitive hearing. Anything you can do to alleviate this (home school is a huge help) will help your child to have more normative behavior. Continue to have your child participate in social activities and be around other children in a "controlled " environment. As a home school mom/dad, you can do this. Join a church. This provides opportunity for social interaction in a more controlled and accepting environment.
Eighth- Assume your child is average to ABOVE AVERAGE intelligence and teach them accordingly. I never used ABA because it didn't exist when mine were young. I'm glad. I just used good old fashioned discipline and a classical curriculum that taught reading, writing, and arithmetic. Grades 1-3 uses lots of repetition and memorization with reciting. At the same time they develop their neuro-motor skills with handwriting, art projects, and outdoor physical activities like swimming. As a home school parent, you control the curriculum and pacing. Your child needs a CUSTOMIZED education and the public schools CANNOT provide it. Home school parents have been helping their vaccine injured children for years. I call it "free market education." YOU DO WHAT WORKS. If you are able to improve their pain/health/communication skills, then they may do just fine in a regular school setting when they are older. One of mine was able to attend a STEM charter high school which enabled him to get a full scholarship to an engineering school. He graduated in three years and now lives as an independent adult with a well paying job that he loves.
Ninth, Most importantly pray and ask for Divine Wisdom for helping your child. Doors will open.
Posted by: Emmaphiladelphia | September 06, 2021 at 11:28 PM
Thanks Kim for sharing. The strange happenings I see is that the Government's seem to be down playing the intelligence of the NT kids as well and to whatever the anthropocentric bench mark is goodness knows.
One of our tuppence piece bits in life was when one of the carers kept on buying our son colouring books for 2 - 4 years old when in fact he can color the hardest of coloring books in with precision and exact colour matching which most humans cannot do. Despite this person seeing his coloring abilities the 2-4 year old coloring books kept coming home week after week and even after explaing look these are to simple for him, he doesnt colour them in, they are to easy, he is not interested in them.....AAAAARGGGHHHH!!!
Pharma For Prison
MMR RIP
Posted by: Angus Files | September 06, 2021 at 06:38 PM
I taught my son to read. Not the teachers.
Summers became the time to get my son caught up - cause time at school was wasted.
In the movie, " Hocus Pocus"
The one line that always gave my son a chuckle, and when he first heard it, said that is true!
When the Sanderson sisters followed the main characters to the school, and decided that it was meant as a prison for children.
I think that the teachers have to love their students.
I think I did.
I have worn many career hats, and one of them for many years was teacher.
What I know that those people above a teacher wants order, for them to be quiet in their seats, and working; even if it s busy work. They don't want labs, or taking them out to look as streams, and getting wet and maybe muddy. And truth be told, if here is going to be youthful pranks, arguments, fights, discourse that is where it does happen.
Maybe big schools are the culprit? Maybe one room schools was the best model? Maybe small community school, or a small surrounding area coming together to have their own schools is the answer?
.There has bound to be a model of a school that leaves a child with happy memories? Not PSTD!
Home schooling has gained all kinds of attention during all of this., and that is a good thing. Still home schooling could isolate a student that has a tendency to isolate to begin with.
Could small community schools be the answer?
Posted by: Benedetta | September 06, 2021 at 11:07 AM
"Many interventions treat behavior perceived from the outside, without understanding the meaning or necessity for the child."
This reminded me so much of how older folks who have lost some of their ability to communicate are treated. A very dear relative of mine experienced a dramatic loss of ability to communicate after multiple strokes and seizures. It was alarming to me how she was, overnight, depersonalized by health care providers, who shifted their focus to the "needs" (read: convenience) of her (family member) caregivers.
I'm not minimizing the burden of challenging behavior on parents and caregivers. Obviously, raising a child or caring for a family member with significant disabilities is almost unfathomably hard--truly unfathomably hard, to the people who have not done it. But your point, Kim, is well taken. A person who can't find the right words and say them out loud is treated as if he is completely irrational. At worst, she is drugged into submission. (I've seen it.) At best, she's treated like a dog that needs to be trained.
A radical change in approach is needed--one that respects the humanity of people who cannot adequately voice their needs.
Posted by: TOB | September 06, 2021 at 10:04 AM
Thank you for posting this thoughtful article, Kim, along with your wonderful introductory comments. It was refreshing to wake up and read an article by someone who has decided to think and analyze for herself, versus conform to and obey the current “standard of care”, which for some, maybe for many, or even for all at some level, isn’t working, doesn’t make sense, and is doing harm.
Please let us know if you contact her, and if so, what you two discuss.
Posted by: Laura Hayes | September 06, 2021 at 07:43 AM