Growing In and Out of Autism
To understand what I am about to share, you have to know a little about me. I raised eight children, six were adopted and of those six five were labeled as challenged. As the spectrum of autism became more cohesive four of the five were considered autistic. In addition, two of my grandsons also showed signs of autism and we — as a family — took immediate measures to change the story.
I learned and discovered a lot of things during those years. These learnings led to six of the seven healing and growing off the spectrum. I then began working internationally with a primary therapy called neurofeedback, and an environmental approach for teaching through play (Preview) .
Initially my clients were the hard cases, primarily having tried everything else first. Many were dangerous, most were non-verbal and incontinent, all were extremely challenged. After a while word got out that I could ” change the story (Preview) ‘ with this unique cocktail of therapies, and that I was willing to come to the home and teach the family what to do. I began s peaking and sharing on facebook to keep up with the interest. I wrote a book to reach beyond myself and put up YouTube videos. I began a podcast. I started chasing my PhD so that credibility would be scholastically extended and I could share what I knew.
With all this my net spread wider and more and more people with younger children, early in their diagnosis, found me. Something disturbing began to emerge.
I was being called into homes wherein a small issue of perhaps auditory processing or slower development or hyperactivity or imaginary friends were evident in the child. A rush for early diagnosis, the newness of the parents, and the push for well behaved nursery school children all combined and led to diagnosis that in my opinion (I am NOT a diagnostician, just an experienced mom and clinician) created the disorder.
Let me give you some examples (some specifics changed to protect identity).
1) A six year old boy who has been doing ABA (Applied Behavior Analysis) since he was three. Upon meeting him he appears to avoid eye contact and be uncomfortable with new people. Within ten minutes he is fully engaged and telling me about his past. He adores playing and has peculiar interests that one could attach to an intelligent curiosity of the world’s archaeological past, but is also willing to play and story tell in more traditional arenas like Disney movies. When a game gets too tough he wants to quit, but when he is reassured that no one minds if he quits, he tries again. When his parents are pointing out his autism he displays it, and when they are going with my assessment– so does he. I look at various reports and find one common element: In all testing he first appears neuro-typical and doesn’t display any symptoms until he is removed from a comfortable office setting and placed in a testing environment. At this point he shrinks and hides from the testers. Since this appears common they diagnose him as ASD. He begins three years of therapy. Over the next few years his ASD seems to emerge more and more. Two things happen. 1- they hire me. I see with fresh eyes. I add neurofeedback which helps to break behavioral patterns quickly and suggest they DON’T put him in special-ed, but instead hold him back a year in kindergarten. 2- they move. The move helps immediately because (in my opinion) they don’t have the necessary resources to maintain his vigilant reinforcement of spectrum behavior. He flourishes.
2) An eight year old boy who comes with the warning that he doesn’t talk to people, look in eyes or play “normally”. The schools are having a hard time with him and he is being programmed for, meaning sent to a variety of therapies (speech therapy and sensory integration) while they await the final diagnosis. He has been prescribed Risperidone for hyperactivity and outbursts, and Trazodone for sleep but hasn’t yet taken any. The moment I meet him I am playful and he shys away, so I jump back in the car and model that I will NOT make him do anything. I mention that he is handsome in an offhanded way. He hovers around me and peeks up at my eyes. I say, “thanks”. I then spend two days with him and he behaves in a neuro-typical boyish way the entire time, as long as I don’t act as if I am going to control his body. I do not do neurofeedback on him for a variety of reasons. He sleeps fine and plays well. He is a little starved for attention but even that levels out. I suggest the family give him loads of control and move him out of the program that is making him anxious every morning for school. They say he cries and screams every morning before going. I suggest making a school spot at home and saying, “You don’t have to go to school, but the law says you have to be “doing school’ so sit here till three or go ” its up to you”. I know this will work. I have absolutely no doubt. The family has yet to try it. They are not my clients so I have less of an influence and they may end up using the drugs instead.
3) She is eleven. Intervention began for her at twenty-two months. She has many many tapes wherein she speaks clearly at the table. She is a mess. In the past year she began pulling hair and biting and refusing to leave her closet. She didn’t want me to join her in her closet, so I made a closet extension with a big refrigerator box. I gathered her spit (which she ruthlessly aimed at my face) into a small tube I found in her playthings and told her that when it was full we would be friends. She stopped spitting and smiled. I spent a lot of time promising not to force and explaining why I thought we could help each other. She let me begin neurofeedback (put a sensor on her head and watch her EEG while giving a video display of her brain activity) as long as I didn’t make her look at it. She laid her head out of the closet and onto my lap. This young woman was definitely disturbed, definitely different, definitely uncomfortable, but not very ASD. In fact, by the end of three days we were best friends and she seemed totally neurotypical when in the comfort of her room, and only my presence. Fortunately, there were nanny cameras set up so I was able to convince the family that she may have been misdiagnosed.
4) Closer to home and on the other side of the story: My grandson began turning his head away from eye contact and twisting out of anyone’s arms but his mothers (or mine as long as I was on the trampoline or dancing) around five months of age. He had intense meltdowns and threw-up whenever he was upset by anything visual or a bad smell. His sounds became guttural and he seldom slept. Our family devised a “pass him around playfully engaging eye contact and speech for hours upon end” program. He eventually reversed each symptom (though things like vomiting and needing long rests after periods of social engagement took years) though he still plays wayyyy too much XBox. We did intervene early, but not with a diagnosis ABA approach. At present he is an A student, has friends, and is much loved.
5) Again, closer to home and on a similar other side of the story: Another grandson was still not talking at age four. He walked on his toes, tapped the top of his lip, and stared at trains (especially Thomas the Train). He was naked whenever possible and played alone for large periods of time. His baby brother had showed signs of autism and we had thus realized that they were both in need. We used a “sign language super fun around the face and highlighting eye contact” approach with this one. He began to talk. His other symptoms were slower to help and he had enuresis (bed wetting) till age ten. One of my favorite memories of this child was my daughter driving around and around the school while he sat naked in the back seat, covering himself with a towel. She would ask, “Are you ready yet?” and eventually he would say yes, put on his clothes, and go to school. When she would pick him up at the end of the day he would get in the car, take his clothes off under the towel, and breath a sigh of relief. He had handled school and held it together all day. It was time to relax. This was our very accepting and playful early intervention program. For focus and bed wetting we used neurofeedback. He had some difficulty paying attention and was a low scorer for the first years of school, but he caught up and is now just cool, different, and very loved. He is a little like a true thespian; on the edges and happy there.
So, what’s the point?
In the past years the rising numbers for those on the spectrum of autism have made autism a buzz word of terror for parents. Blame is thrown everywhere and responsibility for healing is dodged at every turn. In the past few months parents have been successfully and unsuccessfully killing their autistic children and themselves out of desperation and a desire for mutual freedom. Recently studies have shown that autism can be detected at an early age via the EEG and that with the right encouragement children can grow out of autism. Thus social sharing has dragged autism into the limelight and parents have been told to seek early intervention, as if there is no harm done when intervening early, but harm done when the problem is ignored. The primary school sanctioned approach is called ABA and it comes in all shapes and sizes.
The concept seems sound, but early intervention is NOT harmless.
In the stories I have shared with you it was early intervention that took an existing issue and caused it to either grow in or out of autism. In the stories I shared wherein the “system” intervened, the early intervention that is primarily used reinforced the problems and asked the child to “sit still, hands quiet, head up” at an age when this is inappropriate. Early intervention also reinforced the learning problem by rewarding the child and giving them breaks within which to behave abnormally, while data was jotted down and evidence of learning tracked. In addition, talking about the child’s difficulties as if they are written in stone and need to be trained away reinforced their low self-esteem and desire to hide.
To make matters worse, many of the people performing this work and seeking help for their children are being prescribed psychopharmaceutical drugs to deal with the stress, instead of methods that make the journey fun.
Years ago we let children be themselves. We asked them to step up and learn some stuff, then do their chores. We worked together as families, used our instincts and loved our children through. I don’t like what I am seeing. Having a child on the spectrum is hard, but lovingly doable as long as we aren’t complicit in creating the problem.
But when we know it’s our fault we hide our eyes and teach them to go deeper within. When you reach for early intervention, make sure it mirrors that phase of a child’s life. If they are two, three, four, five, six it needs to look like play.
Lynette Louise aka THE BRAIN BROAD is doubly board certified in Neurofeedback and has an MS. She is studying for her PhD in Clinical Psychology with a specialty in Psychophysiology at Saybrook University Global mental health expert Lynette (more…)