In autism there is so much work to be done by professionals, by parents and by those of us with autism. I myself struggle daily to do normal things. It isn’t easy to deal with an environment that is visually and auditorally stimulating to a painful level. So my work is on enduring the environmental challenges while appearing cool, calm and collected. The never ending challenge for someone with a fragile sensory system is that ordinary activities may take extraordinary effort to navigate successfully. Getting oneself able to do this consistently is a big deal because living fully is the goal. Clearly practice is how one’s tolerance for situations that are challenging improves, but this can be more than tough for parents who have to walk into a behavioral minefield again and again not knowing what will, or may, set off their kid because outbursts may be consistent or not clearly consistent in cause.
Professionals guess quite often why a person who has autism is acting in a particular way. Guesswork is natural but it is not reliable. This is because the forces that are at play in autism are still not known. So, the guesses may help or they may make things much worse. Nevertheless, working on self regulation and tolerating a wide variety of settings is much more essential than many other goals in autism treatment.
Well said, Ido. Samuel sometimes reminds others what ‘he’s up against on a daily basis.’ This is important for everyone to understand.
Crikey you are brilliant, Ido. And, like Elizabeth Bonker in “I Am in Here” you are looking out for your parents. Puts the rest of us to shame….
I’m feeling ya. The hardest thing about Autism is not knowing how you’re going to feel from one day to the next. What is comfortable now might be painful in a while. It all depends on how the particular sensory inputs in each environment interact with one another, and that is also modified by my state of mind and level of exhaustion.
Hi Ido, this is what KK commented after reading your post. “i agreed with you. i have really bad sensory issues like sensitivity to touch. i can touch but cant feel it.” Do you know what she means?
Thank you Ido, for your courage and persistence.
You are a wonderful writer and I am glad that you are able to share your gifts with others now that you can communicate by typing.
Dear Ido, I am sure of am one of many who wants to thank you for your invaluable contribution to Making Things Better in General. This is how I see what you are doing. We need so many more like you, people who are willing to challenge the status quo in order to move forward in all ways. Your dogged pursuit of what works best for you is surely an inspiration to all of us, NT and NAT alike. So thanks, and keep up the excellent work!
briggs saroch
Hello Ido! I’m from Brazil – Criciúma/Santa Catarina. It’s been a few days since I found out about you.. I have no words to explain the change that you brought to our family. I have felt at loss in what to do many times while taking care of my 5 year old son, resulting in more mistakes than actual results… and something made me nervous. Your words appeared like the sun after a great storm, illuminating everything around itself, bringing hope and comprehension! I’m eternally thankful to you!! I hope that in the future, the world will have more “Idos” like you!! Good luck and continue being the amazing person you are!
Olá Ido! Moro no Brasil – Criciúma/Santa Cataarina. Faz apenas alguns dias que descobri você.. Estou sem palavras para explicar a transformação que você proporcionou a minha família. Muitas vezes, sentia-me atirando no escuro ao lidar com meu filho de cinco anos, mais erros do que acertos.. e alguma coisa me angustiava. Suas palavras chegaram como o sol após uma tormenta, clareando tudo em volta, trazendo a esperança e a compreensão! Grata eternamente!!! Espero que o mundo se encha de “Idos” iguais a você!! Abçss.