No two people are the same, so why should treatments for autism be?

Donna Williams tells Micheál O’Mahony how she copes with autism.

Author, public speaker and autism consultant, Donna WIlliams describes autism as a “fruit salad” in which various components and differences combine to make no two people the same.

“To understand any person’s autism, you have to understand the pieces of the ‘fruit salad’ that came together to mentally develop, challenge or derail that particular person in a whole range of areas,” said the Australian, who has also been diagnosed with autism.

She advises to look beyond the label and focus on the person. “This person is a person first and, yes, they happen to have a condition, but never lose sight of their own character, their own personality, because if you lose sight of it, they will too,” she said.

“If you turn them into a case, their identity will fall by the wayside. Get out of your head all the ideas, the assumptions and stereotypes that would block you from clearly seeing the ‘fruit salad’ that is in front of you.” she advises.

“Because (different) strategies and approaches are going to unlock development for that person.”

She highlights the importance of managing our assumptions, saying: “One of the important things is to presume competence. Don’t presume incompetence. Remember that people don’t always have to know, in order to do.”

The world of a person with autism can look very different to that of a non-autistic person. Donna says: “I saw my world in bits, so I got the ears of the cat, lost the head. Got the head and lost the body.”

However, at the age of 28, she was able to see the world in a new way because of tinted lenses, which helped her to cut down on the amount of incoming information.

“Seventy percent of incoming information is visual and we take in our visual information as light frequencies, essentially as colour.

“When you use tinted lenses, you are filtering out an amount of incoming visual information (which) leaves your brain more time to catch up and to process what’s left.”

As a result of using these lenses her language processing has dramatically improved”, as well as her ability to “simultaneously process a sense of self and others”.

She explains,:“Yes, we can talk a lot about what’s wrong with people with autism, but I prefer to talk about how can the non-autistic world adapt to autistic processing, so that the person with autism is not compelled as consistently to have meltdowns and have to invest in self-protection mechanisms that end up costing a lot in their development.”

To understand people with autism, Donna says: “We should also learn how the person with autism is communicating through their behaviour or is communicating through their patterns.”

A lot of people with autism can experience sensory overload (chronic “fight-or-flight” states) and not be able to filter the level of information coming in. This can result in confusion, and a complete sensory overload.

To manage this, Donna recommends helping the person with autism to find a physical or auditory rhythm. She said: “If you start one and slow it down…….it’s something the person’s body and brain can tune into. And you see a lot of autistic kids trying to self-regulate like this.

"They will do the bobbing, they’ll do the rhythm stuff or they’ll do the flapping thing. Just trying to give their body a bit of consistency, a bit of rhythm.”

She also stresses the importance of activities like dancing, swimming, trampolining and cycling - anything that can create a body-brain relationship. Donna advises to work in parallel with the person with autism and not be in the person’s face.

She also believes that natural pesticides in plant products, called salicylates, (a substance from which aspirin is derived), can have a significant impact on the health of a person with autism. The presence of salicylates doesn’t show up in allergy tests.

“What I have seen is some kids who were smearers and doubly incontinent; who couldn’t hold a piece of cutlery; had no interaction with their siblings; who were self injurious - that when they went off foods that contained Salicylates, after six months these children were able to self-feed, there weren’t smearing, they weren’t incontinent, they were toileted, they were starting to speak in two- and three-word sentences.”

Donna says she had been shocked to encounter ‘personality dependent disorder’ in the world of autism where carers of children with various levels of disability take over so many of the child’s functions, that the child “gets the impression that they are loved and looked after because this person rescues them”.

She says: “If you train the parent to get it wrong, to behave as if they have developed dementia and forgotten how to do these activities, suddenly the kid starts doing their own toileting.

"They start doing their self-feeding, they start opening doors they couldn’t open…..it was just teaching the parent how to turn around learned helplessness.”

When talking about her own experience of growing up, she said:

“As a kid, I was in a welfare programme from six months to 2½ years old. I believe the routine of that and the predictability of it gave someone like me - who couldn’t process language and for whom the world was very visually fragmented and who could not simultaneously process self and other - gave me exactly what I needed, which was a sense of routine and a sense of placement and that was really important in building this belief that I could safely interact with people.”

In comparing her life with that of a non-autistic person, she said: “I am really pleased that I got to know what it was to experience those really basic things, that non-autistic people have in the blink of an eye, in daily life.”

Donna credits the use of an amino acid called Glutamine, which is used for brain injury and by students cramming for exams, for improving her health and language processing skills. She also explained about the importance of early intervention and how “you can do a DIY program” at home.

“We have the internet these days. YouTube is full of video clips. There are different approaches, we don’t have to buy the ‘one size fits all approach’, because people with autism are different ‘fruit salads’.

“What works for one may actually be to the detriment of another. You can acquire those skills from watching these kinds of programmes. Set up a programme yourself.”

This interview was first broadcast on The Health Zone on UCC 98.3FM. The Health Zone is produced and presented by Micheál O’Mahony, with a focus on health and wellness. You can listen to previous podcasts of the show on www.mixcloud.com/thehealthzone

Following Temple Grandin methods has been of benefit to toddler Luke O’Mahony

Luke O’Mahony is aged 2½ and was first diagnosed in December 2014 as having high functioning autism with accompanying speech impairment. He is the son of Ben and Denise O’Mahony and lives in Crosshaven, Co Cork.

His mother said that initially Luke had “poor eye contact, delayed speech and there was an awful lot of frustration” with him.

“The biggest thing for us was that he didn’t communicate. He didn’t respond to anything that we did, like a typical child would. For example if you were singing to him, ‘he wouldn’t look at you, he wouldn’t join you or anything like that.”

Speaking about hearing the diagnosis of her child’s condition, Denise said: “Your life is being rewritten right in front of you and you have no way of stopping or changing it.”

Denise noticed that the way in which he perceived the world and his reactions to events around him, were similar to that of autism activist, Temple Grandin (interviewed below).

His parents discovered that by continuously repeating a word, until he knew what the word meant - a principle which Temple recommends - was beneficial.

She stressed the importance of “speaking directly with (Luke) and being consistent with discipline,” which Temple advocates, and which worked well for them, and for Luke.

When talking about Temple Grandin’s methods she said: “In terms of his speech, he has come on leaps and bounds” and working with a speech and language therapist has also helped.

As a result of researching Grandin, Denise has also started to limit the amount of time that Luke spends watching television.

He also attends the Rainbow Club in Mahon which he thoroughly enjoys.

From non-verbal child to an honours degree in music

Another family who are applying some of the principles of Temple Grandin are the Walshs from Ballincollig in Co Cork.

Kevin, aged 25, was first diagnosed with a severe form of autism at three years of age. At the time he was non-verbal and displayed very little eye contact.

Talking about how the diagnosis affected her, Kevin’s mother Catherine said: “I think I nearly flooded the car coming home. I was so upset myself. I just cried myself sick over the whole thing,” she said.

During Kevin’s early years, Catherine said that he “would sit and watch the full cycle of the washing machine”, and when he would go into a shop with music playing, “he would be very happy to go around solo in the shop.”

Speaking about Temple’s principles, she said: “Tell the child exactly what you want them to do and the child gets the message. Saying no to a person with autism or Aspergers is ‘no what?’”

Catherine said that things have become much better in terms of support and education, compared to when her son was first diagnosed. “It’s up to the parents. You have to want to open the door for the child because if you don’t, he is going to stay behind.”

She stressed that Grandin’s principles of structure were very important, as were developing skills such as reading and singing, to Kevin’s development.

Kevin said that his first words were “Knockin’ on Heaven’s Door” by Bob Dylan,” which grew from his love of music. He first learned music at the Cork Academy of Music before ending up at the Cork School of Music where he earned a first class BMus honours degree.

He is applying for a MA in Music at Cork School of Music.

EARLY INTERVENTION IS CRUCIAL, AND SKILLS NEED TO BE TAUGHT

Autism activist and best-selling author Temple Grandin (far right) was diagnosed with autism aged two. Now 67, and renowned for her work in humane livestock-handling and autism activism, she has some eloquent advice for the parents of children with autism — much of it focused on developing work skills.

“There is too much emphasis on what people with autism can’t do,” she said in a recent interview. “In the right job, we are very motivated and are very effective if we are given clear goals and projects.”

Grandin, who is a doctor of animal science and a professor at Colorado State University, invented the ‘squeeze machine’, a device to calm the sensory systems of those on the autism spectrum.

Early intervention: Grandin emphasises the necessity of early intervention if you think your child may have symptoms of autism. “You get a three-year-old not talking, not socialising, you got to start working with this kid right now,” she says.

If your child has been recently diagnosed, is three or four years old and is non-verbal, Grandin advises 20 hours per week of one-to-one teaching, saying it should start “right now”.

“Work really hard on the kid’s speech, on social interaction. Learn new words. That’s what they’ve got to do. Don’t wait. Don’t get locked into the label.”

Effective communication: Talking about her own recovery, Grandin said that there were “no magic instant turning points. It’s a long gradual improvement. You got to keep learning”.

Grandin also highlighted the importance of effective communication with both verbal and nonverbal people with autism. “You can’t be vague when you communicate with them. If a functional communication system has not been put into place with a child, his only recourse is behaviour.

“Another thing you got to do is give a chance for the kid to respond. Their brain processes slowly. They freeze up if you try to push them. You got to give them a chance to respond. That is very important. That goes across the spectrum.”

Grandin says teaching the person with autism work skills was extremely important, and said an early start was crucial in this respect. “They’ve got to start that around 12 years old,” she said.

Grandin’s overriding approach is to put an emphasis on what people can do, not on what they can’t. “Kids have to be exposed to different things in order to develop. A child’s not going to find out he likes to play a musical instrument if you never exposed him to it.

"Even adults on the autism spectrum can develop new skills. It is never too late to start. We have got to work on keeping these children engaged with the world.”

Skills need to be taught: “One of the biggest problems I’m seeing today is the need to learn work skills. We’re focusing so much on academics that we’ve taken out things like art, sewing, cooking, woodworking, theatre, music, and other things that introduce kids to careers. You want to build on the things that a kid is good at. I can’t stress enough the importance of good teachers.

“Skills need to be taught, like coaching an actor in a play.”

One of the most challenging things for Grandin was “understanding the social stuff”. She revealed she did not know until middle age that people use eye signals as part of their communication. “I didn’t even know that they existed,” she said.

“There is a tendency to overprotect these kids.” Her own mother “knew just how much to stretch” her, she said, “you got to stretch them just outside their comfort zone, (but without) sudden surprises.”

Instead of screaming “No!” if the kid takes sweets in a shop, Grandin advises giving an instruction, eg “Put the candy back, we are not buying those today”.

“Give the instruction. Don’t say no. You gotta stop saying no. Tell him what he should do. I call that ‘teachable moments’,” she said.

Sensory issues: Referring to the sensory issues that can often go hand-in-hand with an autism, Grandin said one child may have a sound-sensitivity issue, while another might have a problem with visual-sensitivity.

In the latter case, for example, when the child gets tired, an image will pixelate like a bad TV image. , Temple said, adding There is brain scan research which shows that when children with sound-sensitivity issues hear certain loud noises, it activates the fear circuits in the brain.

As a way to empower and support young children with sensory issues, Grandin says “you let them control how close they get to the noise and then sometimes you can gradually desensitise it. But you don’t force them into it”.

No services? For areas without support services, Grandin recommends her book, The Way I See It, and Autism Breakthrough, which describes the Son-Rise Method. “And, you get the grandmothers and volunteers in the community to start working with that kid. Right now.”

This interview was first broadcast on The Health Zone on UCC 98.3FM. The Health Zone is produced and presented by Micheál O’Mahony, with a focus on health and wellness. Previous podcasts: www.mixcloud.com/thehealthzoneDr. Temple Grandin - Feature Article_Short by Micheál O’Mahony