RMS Carpathia picked up Titanic survivors from life boats, the others had drowned
I was recently asked by some friends of ours, how come Monty, now aged 16 with autism, has changed so much over the last ten years. It turns out they have a relative with a 12-year-old son, who has autism and does not speak.
A few weeks later I was asked to have a chat with the boy’s mother and tell her what I have been doing, regarding treating autism, for the last 13 years. Following the standard practice where we live does not give good results. The boy does not talk, was not taught sign language, or to use any augmentative communication device, he cannot write and cannot read. He goes to mainstream school and has a 1:1 assistant, but what does he learn there?
When we started treating Monty after his diagnosis aged three, he was entirely non-verbal, cried a lot and was not interested in anything. From the age of four he was sitting at a little table being instructed at home, as well as going to kindergarten four hours a day. Only from the age of 11 did he become full time at school.
A couple of weeks ago Monty was skiing on black slopes (the hardest ones) in Slovenia and Austria, with his elder brother. He had to read a very dull 220-page book during the school break. We are practicing quite hard maths at home, using an online teaching resource. When getting fitted for ski boots, Monty’s mother explained to the guy in the ski rental store, “he’s autistic … but he can ski”. Yes, he can ski, but it was not a simple road to get there. He started when he was 6 years old with a special needs instructor; when he was eight he fell on the ski slope and broke his collar bone - a perfect opportunity to give up for good, but we did not. Now he skis all week without a fall. It did not just happen, ditto playing the piano, ditto tying shoelaces, learning to cross roads and everything else.
I explained to the mother of the 12 year old how much easier it became to teach Monty, after starting his Polypill therapy, but that you still need to use personalized education alongside personalized medicine. If you use neither, the result is what it is.
Instruction at home does not have to cost anything, it just requires a vast amount of perseverance. All the books you might need have existed for decades. The advent of the internet and touch screens makes everything so much easier.
Even in rich countries like the US and UK, the outcomes in severe autism are usually pretty terrible and yet could be so much better.
Some parents seem to be waiting to be extracted from their “autism hell”, but nobody is coming to help them.
I recall visiting Romania after the fall of communism and being told how many people endured a pretty tough life in the 1980s. Some people actually believed during Communism that “the Americans will come” and liberate them; they never came and Romanians liberated themselves in 1989. It took them 42 years and a little prompting from a man in Gdansk (Lech Wałęsa).
Below is an excerpt from Thinking Autism’s current blog post.
What autism means for my son
My son is 20, has very high support needs, minimal speech, and his communication is limited to basic requests. His sensory processing difficulties are severe enough to have a significant impact upon his attention, focus and learning. He can’t hold a conversation, talk about past experiences, or tell me if he is in pain. He has little awareness of danger, and needs round-the-clock supervision.
Unless an effective medical treatment is found, he will never be able to keep himself safe or make any important decisions for himself, and will eventually require some form of closely supervised residential care for the rest of his life.
That is the stark reality of the impact of autism on my son.
Clearly, if my son’s disability were cured or corrected, then all the barriers to his full participation in society would be completely removed, and he would have no need for societal accommodations. If his disability were managed or diminished, he may well have greater independence and freedom; for example, improved communication skills might enable him to exercise a greater degree of choice and control over his life.
A drug called bumetanide has also been shown to ameliorate symptoms of ASD in a number of trials … The first bumetanide studies were carried out in 2010, but ten years later, translation into clinical practice still seems a long way off.
In the intervening decade, my son’s childhood and teenage years have passed by, and he has entered adulthood, with no prospect of accessing any of these potentially life changing treatments.
When the Titanic sank in the Atlantic Ocean, those without a place in the lifeboats waited 160 minutes for the ship to sink. 120 minutes after Titanic sank, the rescue ship, Carpathia, appeared. Do you stand on the deck listening to the band playing as the ship sinks, or at least try and build yourself a raft?
My suggestion to those left on the deck of the Titanic, or parents enduring their “autism hell”, is to do something about it. If your child learns nothing at school, then teach him at home. If you want bumetanide, go and buy some. If you want a doctor to help you, go and find one.
Why do some autism parents, particularly those dealing with severe autism, not help themselves?
This recent study suggests something that we probably already knew. Some people call it denial, others depression. I actually think it is best described as the "freeze" response, which does actually exist in psycho-babble speak. In the freeze response to a shock there is no fight, no flight, just nothing.
https://www.psychologytoday.com/us/blog/evolution-the-self/201507/trauma-and-the-freeze-response-good-bad-or-both
According to new autism research, we can now call it post traumatic stress disorder (PTSD).
· 18.6% of the sample of parents of children with ASD met criteria for a provisional diagnosis of PTSD.
· Health professionals should screen parents for PTSD when potentially traumatic challenging behaviours are present in children with ASD.
In reality, if health professionals do not want to treat children with autism, they are unlikely to want to treat post-traumatic stress disorder (PTSD) in their parents. but it is a nice idea.
It does not help that autism organisations often give very poor advice (advice proven not to yield good results) and doctors are usually taught nothing about autism; only a very few can help you.
Mainstream schools should not accept children if they cannot teach them at least basic skills. The most basic skill is some form of communication, be it sign language or some form of augmentative communication.
Special schools that do not at least try to teach some form of augmentative communication should not exist, but they do.
