This page is being rewritten as the life goes on. I intend it to reflect my current understanding and knowledge (which changes all the time).
Facts that don’t change: I am a mum to two little children, one of them got an ASD diagnoses in the spring 2017 (at the age of 4y).
First things first: how do you know your child might not be neurotypical? I didn’t know! I swear, I had no idea! I got used to so many things that I stopped seeing them as unusual. My friend raised some flags and so did my health visitor.
Do google search or you tube search if you are concerned, or if someone raised the issue. If someone you trust said something about your child, DO your research. My son was naughty, didn’t like holding hands and didn’t speak much. He wasn’t what I pictured as autistic person (what did I know then!).
Now that you are concerned you probably have a tight knot in place of your stomach. I had. Every time I googled something, I felt like someone hit my solar plexus.
If your health visitor says: I have concerns but let’s wait and see, DO NOT and an see. Do not waste precious time as everything takes ages in the system.
Now if you are already in the club or you are ready to join it, you have two options:
take the BLUE PILL or the take RED PILL.
BLUE PILL choice will most likely make for a calmer life. You follow your doctor’s guidelines, trust that there is nothing that can be done for your kid, join the Early Bird Program if offered, accept life as it is. It is a choice and a valid one. It’s your life and your journey and you have a full right to live it that way if you want to.
If you have a rebel or a fighter in you, you are likely to put the BLUE PILL down the toilet and swallow the scary RED PILL. It’s a rabbit hole to say the least. I took the red pill and never looked back. I wish I never had the need to do all this research, but I am super grateful for info available these days, online.
I need to warn you that the red pill path will take a lot of your time, a lot of your money and your energy. And once you start, it’s hard to stop.
As soon as we knew our son needed help I started researching. Autism is becoming very prevalent and I decided to share all the links, books, places and people who I came across and we found helpful, or I think others might find helpful. Please message me if you have other information and we can grow this list and hopefully help some little (or big) people in a similar situation.
I am not a therapist, not a doctor, I give you no advice but only share what I wish I knew 2 years ago. Here it is (it’s a work in progress)
90% of children on the autism spectrum have digestive problems. Doctors will tell you that it is not connected in any way, but don’t believe this. Our kids often have “leaky gut” syndrome, with their gut lining being permutable and leaking undigested food and toxins into the body and brain. If you child has constipation or loose stools then definitely look into this. Our son’s behaviour is very closely linked to the state of his tummy (bloating, stools). The funny thing is, when I first started doing research on this I was completely convinced that there was nothing wrong with my son’s gut, theere were no obvious symptoms (after we ordered test, my husband said: “what if there is nothing wrong there, where do we go next?”). Yet the food sensitivity test showed that he reacted to 60 foods and “leaky gut” was clearly written in comments from the lab.
This test is not done by your GP or NHS paediatrician, so you need to find a practitioner to arrange it for you if you are interested. Our practitioner is Nijen Aksel.
We first started with Gluten free/casein free diet, but only lasted 2 months on it. After a huge improvement in our son’s behaviour, literally within 24 h, after 2 or 3 weeks he started going back to his old challenging behaviours. I believe this is because what we typically serve the child on the GF/CF diet is gluten and milk free food from the supermarket “free from” section. This food is full of sugar, harmful ingredients, colourings and flavourings. All to make it more like “normal” food. Time to reexamine our idea of what NORMAL FOOD is. “Normal” and “common” are the not same things. There is big difference between slices of organic apple and apple flavoured corn (modified) rings lovingly advertised as the perfect snack for little fingers. Coke, boxed juices, diluting juices, chocolate milk, vanilla drinking yogurt, milk shakes, crisps, things with neon colours are not food, they are food like products. Don’t give them to your kid whether they are on the spectrum or not. Water for a drink is perfectly fine, even better if it’s filtered at home and not kept in the shop in plastic bottles for years.
We have spent a year on a full GAPS diet (we never managed the introduction).
We are now eating Gluten Free/Casein Free/Soy Free, unprocessed, minimum sugar. This means eating an apple instead of a glass of apple juice, whole grain rice cakes with nut butter in place of GF biscuits. Our table is filled with veg and fruit, whole grains, seeds and nuts, and occasional eggs and meat.
My son is autistic and he is a picky eater, his diet is not perfect. I hide very needed broccoli sprouts (super easy to grow in a jar, and extremely healthy) in his fruit smoothie, mushrooms and vegetables in his pasta sauce and lentils in a loaf the I bake just for him.
The bottom line is: diet makes a huge difference for our kid (and our life as a result).
If you strongly believe that your kid’s body has nothing against gluten or milk, try removing those 2 for 2 weeks and see what happens. If nothing, introduce them again, but stay away from everything fake (just read ingredients list)
You need to see this recent research paper
Have a look at this video post by Dr Greger for some scientific data:
This is another huge influence on the quality of your life and your child’s life and behaviour. Most parents when first realise that their child is not developing in a typical way go through grief, anger, sometimes guilt, blaming, sadness. I was stuck there for too long. Here is what helped us to get out of that horrible state:
“Happiness is a choice” by Barry Neil Kaufman- fantastic book that changed the way I see life and world. I have on audible and go back to it when I need to.
The Son Rise program is now available online! (so much more affordable! it used to be flights +$4K for a weeks onsite training). It’s the most amazing tool for creating meaningful interactions full of respect, love and acceptance. It gives you ideas of how to play, what to play with, how to react to certain situations, it has a fantastic facebook support group and it’s still developing.
My own time off couldn’t have been more precious and valuable so I choose to use “Insight timer” – free app for meditation. This is my go to tool to relax and works magic, even if I only have 5 minutes. I do meditate daily, typically using guided meditation, most of the time I am lazy and tired and do it while laying in bed. And it still works.
- “Happiness is a choice” by Barry Neil Kaufman
I’m working on adding notes on:
- Sensory processing differences
- Biomedical treatments
- Speech therapy
Come back soon for more!