ELECTRONICS AND AUTISM
© Article, images, videos and all other material courtesy of Calameo
ELECTRONICS AND AUTISM
Do electronics help or harm my child with autism?
BY MATTHEW NEWELL, FOUNDER AND DIRECTOR OF THE FAMILY HOPE CENTER
Remember road trips when you were a kid? Your family drove for what felt like dozens of hours and you probably spent the time looking out the window, reading a book, or maybe playing the license plate game.
Now picture the road trips you take with your family today How much of that trip do your kids spend staring at an electronic screen?
This is just one tiny example of how electronics have upended modern parenting.
Screens are the mainstay of modern communication, and we often find ourselves moving from one platform to another hoping for more speed and connectivity to the world around us.
We often mistake a child’s “quiet” concentration on an electronic device for downtime, a period of rest.
Unquestionably, electronics are an inescapable part of our culture.
For many modern parents, digital screens—television, video games, tablets, smartphones , or computers—have become a handy tool for placating children who are anxious, unhappy, or simply bored. But the profusion of devices in our culture may not be a good thing when it comes to cognitive development—especially for children with autism.
TODDLERS WITH TABLETS
From the earliest months of life, children nowadays are hyper-stimulated by toys that use sound effects and bright lights. Even some companies with educational missions support the exposure of our children to electronics—from devices that dangle a tablet above a sleeping child’s crib to potty-training With an IPad that encourages toddlers to distract themselves while learning an Important biological function. This trend may be having an adverse effect. A recent study by TARGet Kids!, a practice- based research network in Toronto, revealed the more time children between the of six months and two years spent using handheld screens, the more likely they were to experience speech delays. The research showed 20 percent of these very young children spent an average of 28 minutes a day using handheld devices. Every 30-minute increase in dally screen time was linked to a 49 percent increased risk of what the researchers call “expressive speech delay”.
A FALSE FRIEND
The American Academy of Pediatrics says children are spending an average of seven hours a day on entertainment media, including televisions, computers, phones and other electronic devices. (Note that this is seven hours spent on entertainment, not required school work; many schools now use electronics in their educational curriculum as early as pre-K.) Now, some time in front of a television or tablet undoubtedly can be useful in child-rearing. Watching a good movie or sporting event with your child as an occasional
reward or to Illustrate an educational concept can help build bonds and strengthen connections. Sadly, though, tools too often are used as a way to Simply placate or entertain children. We may turn to electronic devices with the best Intentions—to quiet a child In a restaurant, distract a child during dinner preparation, or entertain a child on a car ride. We forgive ourselves when what we intended to be a few minutes of “table time” turns Into hours. Moreover, we often mistake a child’s “quiet’ concentration on an electronic device for downtime, a period of rest. But this apparent downtime is not restful at all. It stimulates the brain in a way that is harmful for children, especially children with autism.
UNDERSTANDING THE BRAIN
Let’s look at the brain and the effects of screen time on this complex mechanism. The limbic brain, which sits just below the cortex and above the thalamus, is responsible, among other things, for all basic emotions, integrating experiences, short-term memory, and subconscious and conscious attributes toward food and sexuality. The limbic brain links directly to the frontal brain, which is responsible in part for decoding and comprehending social interactions. It is the “thinking” part of the brain that helps us take In nonverbal information while conversing with others and allows us to merge the hundreds of unspoken signs — facial expression, tone of voice, social behaviors, etc.—into a cohesive, organized experience. In other words, it allows us to adapt instantaneously, on the fly, in social situations.
I am not going to say negativity but not a lot of hope – that was so frustrating
They sensed Ronan had issues since he was about five months old. Yet for two years before diagnosis, they had no services or supports and felt in limbo. After the diagnosis, she kept asking professionals what she could do to improve Ronan’s life.
“I got a lot of head shakes; I am not going to say negativity but not a lot of hope – that was so frustrating.”
What changed all that was hearing about the aptly named Family Hope Centre (FHC), which is based in Philadelphia. A reflexologist who Michelle was attending had seen a newspaper advert for a seminar in Dublin and wondered if it would be of any interest to her.
Michelle, a former quantity surveyor, went along and “was blown away” by what she heard. Listening to an explanation of the different areas of the brain, their functions and how stimulating damaged pathways could lead to improvements, she was intrigued and signed up for a three-day parent-training programme that the FHC’s team returned to do later in the year.
During that training, which covers a wide spectrum of brain development difficulties, Michelle was able to take away what she believed applied to Ronan and how to progress with him. They were so happy with the improvements they saw in him, “we got greedy and wanted more”, she says.
The next stage was to commit to a six-month programme, starting with a two-day assessment by the centre’s multidisciplinary team – incorporating education, nutrition, physical, sensory, respiratory and social development – to devise an individualised plan. This is supported with ongoing, unlimited access to the centre through phone or online.
Michelle McKeever with Ronan, her husband Paul and their older son Ryan. Photograph: Rashida Keenan
“Why I went to Family Hope was because it made so much sense; it educated me how to cope with the child but also to try to help him,” says Michelle. “So it wasn’t just coping mechanisms to keep him the way he was but ways to stimulate him and bring him to the best of his ability.”
Asked to give an example of something that made a significant impact, she singles out working on Ronan’s sense of smells. Tests had shown he had no sense of smell and that is closely linked to the part of the brain that processes emotion and memory.
She started to encourage her son to sniff things: salmon, broccoli, lavender, cloves, honey – whatever she had to hand. He seemed to start to develop a sense of smell and engaged more with the process as a result.
For her, it was proof of the key element of the centre’s programme, that the more you stimulate an affected part of the brain, the more function you will get. And in Ronan’s case it was also promoting social and emotional growth.
“His eye contact became more, he was showing affection, he starting speaking – all these things came naturally just by giving him a couple of smells, every day, five times a day.”
There are no words, she adds, to express the gratitude they feel
Being one of only about 18 families in Ireland that the FHC says it is working with, Michelle says it is hard when you are doing what nobody else is au fait with. She knows it is easy for people to mock but stresses that her family is doing it because they are getting results.
It’s a team effort, with her husband and older son Ryan (19), who “because they can see progress they are mad to help”, she says.
After four years on the programme, “Ronan is toilet-trained; we have no problem going anywhere – we can fly at this stage”. There are no words, she adds, to express the gratitude they feel “for getting our lives back – I don’t know how long term we would have survived, as a family or as a relationship, with that sort of pressure”.
Law of brain development
Family Hope Centre director Matthew Newell acknowledges it might seem “really weird” that it has so much expertise on so many varieties of children with neurological difficulties, including those with autism, Down syndrome, epilepsy and cerebral palsy. But “we follow the law of brain development”, he says.
Their approach can be summed up as identifying the specific area of the brain that co-relates to a symptom and looking at how they can work on it, as opposed to just managing the symptom, he explains from Denmark.
He and his team were spending a month there working with 80 children, ahead of their next visit to Ireland to host a three-day training course in Kilkenny in September. Consisting of sessions lasting a total of 30 hours, it costs €960 and is aimed at families, doctors, therapists and anybody who has an interest in neurodevelopment, he says.
If they want to proceed to a two-day assessment for an individualised plan and six-month programme, the cost is €4,860
Parents can go home from that course with a basic plan for their child but, if they want to proceed to a two-day assessment for an individualised plan and six-month programme, the cost is €4,860. Twice that for a year, including repeat assessment.
The centre’s focus is not on the labelling of special needs children through diagnoses but rather on what part of their brain was affected, be it before, during or after birth.
“We explain our well kids by what they can do and we explain our hurt kids by what they can’t do – and they get stuck there,” says Newell. The centre wants to inform parents how they can take an active role in supporting their child’s neurological development.
In looking at the entire brain and its seven principal domains, it is possible to map where the functions should be and therefore to understand the source of a child’s malfunction, says Newell. “Then we know where to start trying healing, supporting, developing, maturing and promoting the pathways.”
Well kids develop in stages – they crawl on their bellies and then they creep on their hands and knees, then they walk and then they run. In children with developmental delays, a pathway has been blocked so you have to “reinforce where the stopping was – not where you want him to be, you have to start where he is”, says Newell. That means going back to the appropriate developmental stage.
© Image courtesy of The Irish Times
Take a child who is two years behind in reading, writing and arithmetic and struggles with daily homework. He doesn’t seem to be able to focus. The developmental stage of belly crawling helps to organise a particular part of the brain that creates motivation and focus. Get that child to crawl 100 yards on the floor every day for 100 days and all of a sudden he starts to focus in school, says Newell.
The centre co-ordinates its results, using a standard assessment tool for paediatric rehabilitation, WeeFIM, “to show we’re ethical, we’re fair and we prove to the world that this works”. Newell attributes the apparent success of the centre’s programmes – “300 per cent above the national average” – because they focus on the child’s neurological difficulties and empower the parents.
“We want a more symbiotic relationship than a co-dependent relationship – I will give as much information as I can about the brain and you tell me about your child.”
The Newells both worked in Delacato and Doman’s Institutes for the Achievement of Human Potential in Philadelphia for 20 years
Newell and his co-director, his wife Carol, were inspired by the work of the late educationalist Carl Delacato and the physical therapist Glenn Doman. The Newells both worked in Delacato and Doman’s Institutes for the Achievement of Human Potential in Philadelphia for 20 years before leaving to set up the Faith Hope Centre 15 years ago.
The American Academy of Paediatrics has described treatment programmes that offer Doman Delacato Patterning Therapy (DDPT) as “unfounded”. It said “they are based on oversimplified theories, are claimed to be effective for a variety of unrelated conditions, and are supported by case reports or anecdotal data and not by carefully designed research studies. In most cases, improvements observed in patients undergoing this method of treatment can be accounted for based on growth and development, the intensive practice of certain isolated skills, or the non-specific effects of intensive stimulation.”
However, when this is put to Newell, he says: “We don’t follow those protocols at all. We are an evidence-based practice.” The FHC website states that evidence-based practice “is not a list of empirically proven treatments. Instead, it is a framework from which clinicians use multiple factors (research being foremost) to decide on a treatment course”.
Orla Hardiman, consultant neurologist and professor of neurology at Trinity College, Dublin, says there is validity to the idea that the brain is more “plastic” than once thought and that it can be adjusted and modulated. Protective strategies against later-life dementia, she points out, are based on that concept – that the brain is like a muscle, if you exercise it, you improve it.
Her concern is that in the case of some childhood disabilities, “there are structural changes in the brain that are not really amenable to that. While there is evidence that intensive support to children with disabilities can maximise what they have, it can’t actually generate what they don’t have.”
The evidence for continued professional intervention after a person has ‘plateaued’ is not very good
Prof Hardiman says the only way to demonstrate the effectiveness of any given treatment programme is to do a randomised, controlled trial. Personal testimonials can be very compelling but she would be sceptical and advises caution around any treatment that has not undergone such a trial.
She acknowledges that for any condition, a multidisciplinary approach improves outcomes. “We do have multidisciplinary teams in Ireland but we don’t have the resources to do intensive therapies.” However, she says, the evidence for continued professional intervention after a person has “plateaued” is not very good.
To parents considering pursuing alternative programmes, she would say “caveat emptor”; look for “before and after evidence that validates it scientifically” and discuss what is being offered with expert therapists in local services to find out how it differs from what’s already available.
Lorraine Dempsey, chairperson of the Special Needs Parents’ Association, also urges caution over paying out large sums of money for therapies. While stressing that she is not referring to the Family Hope Centre, there is a tendency, she points out, for people to be more committed to programmes they have decided to invest in, rather than ones that are available for free.
“Any input into a child, if done on a regular basis, is also likely to provide good results but we tend not to, if not directly paying for it.
I just felt I wasn’t doing anything for them. I was disappointed in my own abilities.
“When spending a significant amount of money, you have to take a critical step back and ask yourself, if I was carrying out the therapy programme that I get, albeit not very often, from the HSE, at home on a daily basis, would I see the same results?”
Catriona O’Hanlon has been a special needs teacher for 17 years, and currently works with children with severe difficulties at St Patrick’s School in Enniscorthy, Co Wexford.
“I just felt I wasn’t doing anything for them. I was disappointed in my own abilities.” When she stumbled across the FHC and went to an introductory four-hour seminar held here, some of the children she had taught “were popping into my head”. She was so fired up by what she heard, she persuaded the principal to let her attend the three-day training programme last year.
O’Hanlon has since incorporated elements into her work over the past school year; some techniques she did with the class of six on a group basis, others one-on-one.
Her personality is also evolving, she is interactive and starting to verbalise
“I had to do the curriculum still and it was tough to weave the two in together but I have successfully done it in different areas. A lot more work needs to be done now to perfect it.”
She explained to parents what they needed to be doing with their children at home and, after a year of seeing benefits, some of them are planning to do the FHC training course themselves.
O’Hanlon gives the example of a 12-year-old girl who used to sleep most of the day. She would be put into a walker that had a brace on her waist and she had a paddle to sit on while she was walking.
“She is now walking on her own. Her dad reported that she got up in their living room and walked across it, totally on her own. She had been taking steps throughout the year, but that was the biggest thing.” Her personality is also evolving, she is interactive and starting to verbalise.
“Using her dad’s words, ‘I have a different child than I did in September, thank you so much’.” Another child became toilet-trained at the age of 12 “which was a huge thing for the family”.
O’Hanlon hears people’s doubts about the programme but she has seen improvements for herself.
Likewise the McKeever family, who have now taken Ronan out of a special school to do home-schooling, which gives Michelle more time to do the FHC programme with him. It requires a lot of time and energy on her part, but the joy of seeing him progress is ample reward.
The Family Hope Centre is running a three-day training course iqn Kilkenny on September 8th-10th. Cost €960 including lunch and snacks; €1,795 for a couple. For more information see familyhopecenter.com.
Written Matthew Newell & supplied by Calameo