Published on 12, July, 2020
Im new here but wanted to tell my story to see if anyone else had been in a similar situation to me. I feel like I need a bit of hope
So when my boy turned 2 things started to change. He went from eating everything to full refusal of all hot foods bar Cous Cous and Chicken Nuggets. Still to this day (nearly two years later) he is the same, will not eat cooked foods and has a very limited diet with other foods in general too. He is very sensory based and refuses to wear certain clothing, does not like lots of noise and high pitched sounds and has quirky mannerisms such as feeling and sniffing hair, tapping my legs and making a Di Di or Gii sound. He does not like being touched and does not like cuddles or affection (other than from a very select few people). If someone touches him he can get very aggressive verbally and stressed out. He is very sensitive in one way but in others not so much. For example he could bang his head quite hard and not even notice but if he was to get the smallest graze on his hands or legs he will sob and sob saying how much it hurts. (There is so much more I could put but just doing a few examples)
As he has got older we have noticed that he does not respond very well to everyday life demands and we have found ourselves having to become very specific with the way we talk to him and respond to him. He can be very angry, if I'm being honest he is angry about 70% of the time and he is very impulsive. He goes from 0 to 100 in seconds and his moods are awful, everyday is an emotional roller coaster. We could say something perfectly normal and fine to him and he will snap back and be verbally aggressive with us because we haven't worded it how he likes it to be worded. We did some research and came across PDA. Now this was a big find for us as PDA could literally be written about my son. It is him all over, no denying it.
I have spoken to numerous professionals about my son and they all admit they see something there in him however nobody seems to be helping me take it further. My son has been referred twice to Comm Paeds and both times been discharged due to lack of evidence. The trouble is my son can mask things very well. He is SUPER clever for his age (and in no way am I tooting my own horn) by 9 and a half months he was walking, he could identify animals in a book when asked to find them. By 18 months he could find body parts including brain, heart, eyebrows etc and name all colours, numbers to 10, vehicles and shapes. He even began recognising certain numbers too. Around 2 years old he could recognise over half the alphabet and by 2.5 he could spell his name. His speech is phenomenol and extremely advanced. When he was 2 he was opening Xmas presents, naming the toy as well as what it was made from "oh thats a plastic dinosaur with metal screws". I can't keep up with what he is achieving. What I'm trying to get at is I've been told numerous times that he is not Stereotypical Autistic enough. Because he can give eye contact and attempts to make friends and doesn't hand flap its like noone wants to know. Because he is clever and communicate he's "okay".
Anybody else having my struggles?
Being a parent, I know how much we desire to connect with our kids. You are their best advocate! Hopefully this will help:
These kids have difficulty with Filtering. EVERYTHING is intimate, invasive, arresting. A non-consensual hug can feel like sexual abuse.
The Autistic brain is wired such that it cannot Filter incoming signals like non-autistic peers. And so anything which is invasive, unkind, non-human friendly, inconsiderate, is Sensed with a great deal of intensity.
The second Element which is a different experience is our heightened ability to focus or a Flow -State. Have a look at this site: https://monotropism.org And so harsh, smash-cut interruptions will be like waking a sleepwalker. To an Autistic, they will Genuinely Feel Like Waterboarding.
In modern society, sensory torture is illegal. Look up White Torture, Sensory Deprivation and Interrogation, Sonic Weaponry and Enhanced Interrogation Techniques - sensory overload (bright lights or strobe lights, loud noises or music).
However, Autistics will have a daily experience of these to some level, or some degree. Modern society is such that:
Clothing is made from Petroleum and IS plastic. It's called Polyester or Nylon and if it catches fire, melts onto the skin. It is like wearing paint. And we all know the horror of what happened to the Bond girl who was painted gold.
Our sense of smell is supposed to be used to smell danger: it is used by foragers to decipher between poisonous and edible mushrooms. To identify an electrical fire or lamb which has gone off. Some can smell formaldehyde and even Covid! Now, currently it's still legal for companies to manufacture scented candles, cleaning agents and air 'fresheners' with VOCs which are incredibly harmful. A scent is made up of micro particulates which interact with the lungs and the gut. https://oneseedperfumes.com/blogs/news/world-environment-day-why-your-perfume-may-be-polluting-more-than-your-car
Sounds: There's human-friendly sound such as natural acoustics out doors or in a well treated space and then there's non human-friendly sounds such as electrical wires buzzing, reverberations from cafeterias and other terrible structures which no thought or intention around acoustics went into. Now, your child might have the capacity to explain the physics of this to you once they're 18 or 28. But not yet. For now, trust that they are tapped into the natural order of the world quite well. Hand Dryers have been clocked exceeding a level that is damaging/deafening to the human ear.
As for food, be mindful of Gut issues. One doesn't need much. Just the right nutrition. If all they will eat is a chicken, buy organic. Instead of worrying about a buffet, simply spend time making the breaded stuff and find a good mixture they enjoy. You could try a Very Plain gluten free flour, organic milk and add in mineral rich salt (like charcoal, clay or natural sea salt), don't force them to eat vegetables which adults might need due to no longer regenerating like young children do. One fruit will do. Jane Goodall lived off of Bananas for months at a time and lived a long life. This should make your life easy and if they like the breaded ingredients, perhaps you can add honey (with good B vitamins) or maple syrup (which has iron) or use similar ingredients to make a no-sugar-needed crumble. Natural sweetness plus lemon work well I've found. But given I'm allergic to grains/cereals, and sugar cane is a grass, I've found it easier to digest honey, coconut, maple or date sugar. Artificial Sweeteners are not human-friendly.
Back to the main two complications:
Interruption severs a flow-state and as a result, doing more than One-Thing-At-A-Time is a Health and Safety Issue.
We cannot dull our senses like Non-Autistics.
But any rules of good manners will suggest it's unkind to interrupt and unkind to overwhelm. :)