Monday 18 December 2017

The stereotypes don't work: moving beyond Rain Man and other myths

Leading researcher: Professor Louise Gallagher at Trinity College. Photo: Arthur Carron
Leading researcher: Professor Louise Gallagher at Trinity College. Photo: Arthur Carron

Elaine Keogh

Ahead of World Autism Awareness Day (April 2), families affected by autism debunk some of the myths about this poorly understood condition while scientists struggle to come up with an effective way to help.

Jacinta Walsh from Drogheda in Co Louth has been campaigning for supports for children and young people with autism since her son Sam was diagnosed when he was two years old. He is now 17. For her, the most common misconceptions include:

'People with autism do not speak'

"While many people with autism do not speak, they all communicate in various ways," says Jacinta. "Many do speak but may acquire speech later than typically developing children, or they may need some time to formulate their answer when asked a question.

"For those who do not communicate with words, there are many other ways in which they can communicate such as watching and observing behaviour. Many use augmentative and assistive communication methods, the most well known is probably PECS (Picture Exchange Communication System), where the child exchanges a picture of what they want.

"This can be developed to quite complex levels of communication without any actual words being spoken. These days there are also many apps and devices which can help support communication."

'Children or adults with autism do not know how to make friends'

"People with autism can find it difficult to make friends, but most will want to have friends," Walsh counters. "They may not want to be in the company of friends as much as a typically developing peer, but most, like everyone, enjoy doing shared activities and having fun with other people.

"For some people with autism with specialist interests in things like computers, gaming or superheroes, there can be nothing better than meeting someone with a similar shared interest. Many people with autism find social rules really confusing and can find it very difficult to make friends thus, leading to loneliness and isolation."

'Children with autism do not give hugs or show emotion to their family or friends'

"Many people with autism are very affectionate and tactile," says Jacinta. "People with autism often have sensory issues so some people may not like to be hugged, and some want to be hugged really tightly.

"They may show emotion in different ways to others, but have feelings and can experience joy, sorrow and other emotions like anyone else."

'More boys than girls have autism'

"This is true, the ratio is about 5:1 boys to girls," she says.

'People with autism can be great at maths or be ­brilliant scientists - it compensates for being non-­verbal/not having social skills, etc...'

"There is a very tiny percentage of people with autism who would fall into the savant category," says Walsh. "Often people with autism can be good at subjects like maths or computers as they are often logical thinkers who can focus on one thing exclusively. But there is no automatic trade off or likelihood that if someone is non-verbal that then they will be a genius at art or music."

'Autism is hereditary'

"At the moment there is a lot of research into the causes of autism," says Jacinta. "There is some evidence that it is genetic, but many people diagnosed today are the first people in their family to have autism. There may be other environmental triggers or combinations of genes and environment that cause autism, but at the moment we just don't know."

'If your child walks round in circles or plays with the same toy repetitively then they have autism'

"There is no blood or medical test to diagnose autism," explains Walsh. "It is diagnosed from a set of behaviours, and if you have a certain number of these behaviours then you are on the autism spectrum. Walking round in circles and repetitive play are two of the behaviours that are on this list, but on their own do not give a diagnosis of autism.

"Many of these behaviours are things that we may all do to some extent, but autism is diagnosed by the combination of a number of behaviours, not just one. If anyone is concerned they should contact their local Disability Team at the HSE."

'If children do not get vaccinated, you reduce the chances of developing autism'

"This has been completely disproven," says Jacinta. As well as being severely autistic, Sam also has a learning disability, is coeliac and has type 1 diabetes.

"He was a beautiful, perfect, happy little boy and we were being told that he would never love us, would never communicate, would never be happy," says his mother.

"These statements have all been proven wrong over time.

"Sam is also a very happy, loving, friendly boy who loves his iPad, Winnie the Pooh, Barney, nursery rhymes, the Beatles and One Direction!

"That is about 95pc of the time. For the other 5pc, Sam can present with severe physical, aggressive, assaultive challenging behaviour. This can happen without warning, in any situation and without any trigger.

"Sam is built like a rugby front-row so this can be extremely dangerous. He has no awareness of what he is doing and it is not personal, it is an internal complete overload.

"He turns 18 in July and there is no adult respite for him and us to avail of. He loves going to respite and it is the single biggest thing that keeps us going.

"It gives us some breathing space where every door in the house does not have to be locked at all times and we are not listening for the minutest change in mood.

"If there is no respite then it is very likely that we will have to start thinking of residential placement.

"Sam's autism has changed all our lives irrevocably. We are extremely limited in what we can do outside the home.

"There is a big impact on our other son. Most things 'normal' families do are not open to us. The constant fighting for services is the biggest challenge."

Expert view -  Professor Louise Gallagher: Many children with autism have brains wired differently

Research has found that the brain of a child with autism can be wired differently to other children and there may be a role played by proteins in how brain connectivity works.

Leading Irish researcher in the field of autism, Professor Louise Gallagher of Trinity College, says that neuroimaging research has shown "connectivity in the brain maybe disrupted in autism".

"The best way to think about it is this pattern of disconnectivity that might be happening in the brains of children with Autism Spectrum Disorder (ASD) shows that they might be wiring themselves somewhat differently to the way typically developing children are wiring their brains.

"That speaks also to some of the genomics (genetic) findings where we see some of those proteins that might be involved in helping to develop brain connections are the proteins that are being disrupted."

The genetic research was the Autism Genome Project that examined the role of DNA and genetics in autism.

At the end of the project, they had looked at close to 2,000 families "and the main output was it served to highlight that, for a small but significant proportion of people with autism, there were specific genetic causes that were to do with changes in the structure of their genome".

Where part of the genome (a person's entire DNA blueprint) was missing or duplicated or disrupted, "you were maybe getting changes in the expression of the genes in those regions that might lead on to changes in how certain proteins are functioning in the brain".

There are rare genetic changes being increasingly recognised as autism syndromes and one gene mutation featuring in research is Neurexim 1.

"It is a protein that stabilises the brain synapse, which is the connection point between brain cells in the brain. We now know that people with deletions with that particular gene might be at increased risk for autism as well as a range of other developmental difficulties."

Work is under way to follow up patients with some of those rare genes to understand what happens to them and why they may have autism or another developmental delay.

The project, funded by Science Foundation Ireland, in conjunction with Prof Sanbing Shen at NUI Galway, is following up on these patients.

The research includes brain imagery as well as stem-cell research.

Professor Gallagher is also seeking, with the Institute of Psychiatry in London, EU funding for new research, which could see clinical trials for drug therapy for some autism symptoms.

She says people with autism can find the most impairing symptom for them can be "where sounds or tastes or smells or the sight of something might be aversive and very distressing for them".

"So going to a supermarket or a public place can be really hard, or has to be really well planned and managed for them.

"We hope drug therapies might help improve social communication, help reduce rigidities and target other symptoms.

"If successful, we would be seeking to run clinical trials for new drug therapies for some patients and hopefully will do that here in Ireland.

"It is a very interesting and exciting development coming out of our increased understanding of autism." On the issue of vaccinations, she says: "My public health message is that it is really important to vaccinate your children - you are not putting them at increased risk of autism."

One of the causes of autism is rubella in pregnancy.

"In Japan, during a period of time when the rate of vaccines went down, the rate of autism went up."

April is Autism Awareness Month and Prof Gallagher says there is a need to not just realise that it is a neurological condition.

"We need to research it," she says. "We need evidence-based therapies, we need not to ignore evidence-based therapies, we need to support them and implement them at a medical, psychological and behavioural and social level.

"They really need to be supported.

"It is a very significant disability. Some people with autism will never work but some, if supported, can work - and that will give them a great sense of themselves and it promotes their mental health and well-being."

- Elaine Keogh

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