‘I KNOW You’re in There’ by Marcia Hinds is a raw, honest, and intimate book charting the life of her son Ryan. Born in 1988, Ryan was diagnosed with autism at the age of four and immediately written off by doctors who advised his distraught parents to place him in an institution. A psychiatrist said he would be lucky to work in a basement somewhere where he did not need to interact with people. How wrong she was. Ryan, 37, is now an aerospace systems engineer, has many friends and loves to travel.
Autism is often labelled incurable, and the only solution offered is strong medication to control aggression, but Ryan’s family refused to believe nothing could be done. Marooned on ‘Autism Island’, they searched for a life raft. Escape meant rejecting conventional thinking and discovering autism’s root cause. It was a long, bumpy road. As Marcia says: ‘We almost didn’t make it through this autism HELL.’
As a baby, Ryan screamed constantly. As a toddler he had conversations with objects rather than his parents. He refused to wear clothes with buttons, or jeans, and insisted all labels be cut out of his shirts. He dragged the vacuum cleaner around like a pet, plugging it into every socket in every room. He loved to turn light switches on and off and was obsessed with keys and locks. At 30 months, he dragged a chair to the rack where the car keys were hanging, lifted them off, walked into the garage and started the car which jerked forward and took out the garage storm screens.
Ryan would scream blue murder if his demands were not met. This could not continue, so Marcia and Frank began visiting any doctor not locked into conventional thinking, and many who were. They discovered autism is not simply a psychological disorder, it is a complex medical condition with physical imbalances which can cause psychological symptoms, a fact rarely discussed in doctors’ surgeries today and certainly not when Ryan was born.
Ryan tested positive for Epstein-Barr virus, human herpesvirus 6 (HHV6), human herpesvirus 4 (HHV4) and suffered constant ear infections treated with endless courses of antibiotics that disrupted his microbiome. The gut is home to 80 per cent of the body’s immune system and Ryan developed a long list of food allergies.
His autism was diagnosed as autoimmune encephalitis, inflammation of the brain and a malfunctioning immune system. Once those issues were addressed with antifungal and antiviral medication, he began to recover, but at seven he was still stuck in two-year-old behaviour. Rather like someone who has suffered a stroke, he had to learn the basics of good communication. He would need to learn the stages of development he missed.
As well as medical intervention in the form of antivirals and antifungals, and a wholewheat, dairy-free and sugar-free diet, Ryan had applied behaviour analysis (ABA) (which some doctors strongly advised against), and focused rehabilitation which helped him transform from a child who screamed at the fridge until someone opened it, to a teenager capable of studying for an engineering degree on campus. Motor skills elude many children on the spectrum, but Ryan mastered gymnastics and gained a brown belt in karate. As a college freshman, he learned to surf.
Ryan had appeared to be developing normally as a baby. He passed his eight-week-old developmental check with flying colours and, like many children who are diagnosed with autism, was considered advanced. As part of that wellness visit he received three vaccines, diphtheria and pertussis (whooping cough) by injection, and the oral polio vaccine. That night he vomited repeatedly and developed a fever. Marcia sensed he was in pain so gave him ibuprofen. The next morning, he slept more than usual but he was too young for them to notice any immediate changes in his development. Marcia cannot say for sure, but strongly suspects, vaccines played a part in Ryan’s developmental decline.
Marcia, a typical Jewish mum, describes herself as ‘overprotective’ and a ‘hover mother’. Frank, a Catholic, often intervened and insisted Ryan try activities that as Marcia says, ‘scared the crap out of me’. They both admit with regret and shame that they shouted and smacked Ryan as they tried to shock him out of his autistic world and bring him into theirs.
Not pandering to the quirks of autism is the cornerstone of ABA therapy which critics say is no better than dog training. It works, though. ABA teaches autistic children who struggle in social situations how to interact and how to behave – it drags them, often kicking and screaming, off Autism Island and into the real world.
ABA focuses on correcting socially unacceptable behaviours, one at a time. Ryan would bite his older sister Megan and squeeze her arm until she cried. To stop him Marcia would remove him from the situation, calmly take him to The Chair, sit in front of him on her own chair, and wrap her legs around his so he could not escape. She instructed him to do two things she knew he could do, such as stand up, then touch his head: his reward was that he could go and play. Ryan hated The Chair and eventually got the message he could avoid it if he stopped hurting his sister.
Megan was co-opted to Ryan’s rehabilitation team when she was seven. Her job was teaching him how to interact with other children and make friends. Ryan liked to line up his toys. Megan taught him how to play with people, not just objects. Her role helped her feel less resentful that Ryan took up so much of her parents’ time, and Marcia made sure that on Saturday nights, when Ryan went out with Frank to ride in hotel elevators, another of Ryan’s obsessions, the two of them ate junk-food and sweets Ryan was never allowed, while watching Megan’s favourite TV show, Dr Quinn, Medicine Woman.
It was a brutal journey, but Ryan passed milestone after milestone, and by the time he began high school he was no longer classed as autistic.
Ryan survived a lot to get there, including relentless bullying from kids in middle school. One jumped on his table in biology class and dry humped his face, but was not prevented or admonished by the class teacher or headteacher. Another teacher got angry because he finished his maths workbook ahead of the class – Ryan excelled in maths – and punished him by making him do the whole book again.
Their journey finding the right doctors, healthcare practitioners and carers who could follow the ABA routine was exhausting. The pressure on their marriage was immense, but they stayed together with Frank, a pilot, the breadwinner (supporting Ryan’s recovery cost thousands of dollars) while Marcia, a former teacher, stayed home.
Ryan is clear. He wrote: ‘Our story has a happy ending, but how many parents are still told there is no hope for their children?’ He admits it was hard to read the book and that he found the weird things he did embarrassing. He says he has mixed feelings about telling his story in all its gory detail but says because of his family’s intervention, he was able to escape Autism Island. He said: ‘I was lucky to have a family who fought back and never gave up on me. They were always there, no matter how difficult I made things for them.’
This book will make you cry, laugh, wince and cover your eyes, but it is essential reading for parents whose child has been diagnosed with autism.
I Know You’re In There: Winning Our War Against Autism by Marcia Hinds. Foreword by Dr James B Adams, Director, Autism Research Program, Arizona State University. Published by Skyhorse.
