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5 questions about autism and how to ask them

There’s no such thing as a stupid question‘. I mean sure, when you are in education. But we all know there is such a thing, and we experience it every day. For example, when your tummy is rumbling and someone asks if you’re hungry. Or when you hit your knee/toe and someone asks if it hurts. Or ‘Would a fly without wings be called a walk?’. No.

One of the great things about awareness is that it gives you the knowledge to transform a stupid question into a meaningful enquiry. So, here are 5 stupid questions I’ve been asked about autism and how you can turn them into meaningful enquiries.

  1. Have you tried disciplining him?
    • Apologies stranger, I can’t hear you over my child writhing in sensory pain and screaming bloody murder in the middle of this busy supermarket parking lot.
    • Think: How will taking away his favourite toy, switching off his favourite music or making him stare at the wall for 20 minutes cure his sensory sensitivity? Discipline is taught when children are naughty. For example, when I was a child and I was disciplined by my parents because I’d done something they had expressly told me not to. Being overwhelmed by sound, smell, colour and touch is not something people with sensory overload can control. Christos wasn’t reacting to an instruction or a restriction with his tantrum. He was reacting to physical pain. You can’t discipline him for that just like I can’t discipline you for asking that question.
    • Meaningful Enquiry: What’s bothering him/her?
  2. Maybe he’s just hungry/thirsty?
    • Thanks.
    • Think: Every parent is paranoid about their child’s nutrition. With autism and sensory overload you have the additional hurdle of them not eating everything and their heightened sense of taste. The second post I wrote for this blog was about Christos’ food – Best Food Critic in Town – and the Gluten-Free diet. My dad spent hours developing new recipes which incorporated all the vital nutrition he needed and adding it to the 5 things he agreed to eat (egg and lemon soup, pasta with tomato sauce, curry, chocolate cake and halloumi). It got to a point where our mum and dad’s food was so delicious, he wouldn’t eat at a restaurant. We took food with us; hell, we tool grated halloumi with us. He’s obviously a lot better now, he eats salmon, cremes, chicken, fish curries. I think the weirdest thing he doesn’t eat is potatoes. But hey, I don’t eat beef so I guess we’re both weird. When they are young PECS is a massive help in terms of communication and hunger. I definitely recommend implementing it at home, but also having a travel version for trips to the restaurant or market.
    • Meaningful Enquiry:  Can I get them something they like?
  3. Autism? Does that mean he’s really good at maths?
    • Maybe.
    • Think: No two people on the spectrum are the same. Chris is good at math, but he’s also really good at other things. He has great memory, an amazing sense of direction and he can cook. Stereotyping people on the spectrum and not realising that, just like all of us, they can be unique in their abilities is one of the biggest downfalls of understanding autism and befriending someone on the spectrum.
    • Meaningful Enquiry: What does he/she like to do?
  4. Does he/she understand? 
    • Do you?
    • Think: Yes, they understand. It takes time, alternative therapies, PECS, speech therapy, studying, learning, testing, preparing etc but yes, they understand. Just because someone doesn’t speak your language doesn’t mean they have nothing to say. That’s what autism is, a different language. All we have to do is understand it. There are so many unanswered questions, facts, about autism that we have yet to come to grips with.
    • Meaningful Enquiry: How can I tell them [something]?
  5. What’s wrong with him?
    • The short answer is: That question. That is what’s wrong.
    • Read: Autism has been in the limelight over the last few years. Just a Google search of the word and you get articles, organisations, news items etc. The basic information is there. I have so much admiration and respect for all the parents (including my own) who raised extr-aut-inary humans without this information so readily available to them.

For those of you who are willing to go the extra mile, I will be starting the Autism Awareness Diploma with Online Academies which is currently on Groupon for £19. Netflix is also streaming a new series in August called ‘Atypical’.

Learn, read, educate yourselves. Read/watch the sad stories, the happy ones, the scientific ones. Each one has something to teach you.

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The Biology of Autism

  1. The gut.

You may recall me talking about a ground-breaking new study in January (Hope in Poo) where alterations in the gut ecosystem were linked to autism traits. These scientists used Microbiota Transfer Therapy (Fecal microbiota transplant (FMT), also known as a stool transplant, is the process of transplantation of fecal bacteria from a healthy individual into a recipient) which was tested and proven to improve gastrointestinal and autism symptoms.

The gut has always been under observation in autism study. That’s why a gluten-free and casein-free diet is an alternative treatment. In “Best Food Critic in Town” I mentioned: Marilyn Le Breton, who explains:

“When you eat, the food you consume is broken down in your stomach. The bits that are not used by the body are flushed out as waste matter. In autistic people, the breakdown of two proteins present in some foods, gluten and casein, is not completed properly. The resulting fragments of these proteins are called peptides. Peptides are small enough to pass through the wall of the gut, rather than being processed in the normal way. As the peptides journey around the body, they make a pit stop at the brain, where they do untold damage before continuing their journey and finally making their way out of the body, via urine. Both are very similar to morphine, a highly addictive drug.”

2. Stem cells

In “Dog Treats, Ice Cube and Rutgers University for Autism” I mentioned stem cells research, a first-of-its-kind study at Duke University in Durham, North Carolina. The study assessed whether a transfusion of the children’s own umbilical cord blood containing rare stem cells could help treat their autism.
Dr. Joanne Kurtzberg, who heads the Robertson Clinical and Translational Cell Therapy Program, teamed up with Dr. Geraldine Dawson, director of the Duke Center for Autism and Brain Development began a trial over two years ago. During this time 70% of the 25 children, age 2 to 6, were found to have behavioral improvements by their parents and tracked by the Duke researchers. The children traveled to Duke three times over the course of a year. They underwent a series of evaluations such as autism assessments, MRIs and EEGs to track their brain activity. On the first trip, the children received the cord blood infusion along with the intense evaluations. Each child received 1 billion to 2 billion cells, given through an IV in their arms or legs. At six months and then a year later, the children returned for more tests and observations.

Both Dr Kurtzberg and Dr Dawson have personal experiences with autism which shaped them and what they wanted to do in life. They are now in the midst of the definitive trial on whether cord blood can treat autism — a double-blind, placebo-controlled trial involving 165 autistic children, ranging in age from 2 to 8. The FDA has oversight of the study.

At present they are overseeing the definitive trial on whether cord blood can treat autism. This is tested by using a double-blind, placebo-controlled trial involving 165 autistic children, ranging in age from 2 to 8. The FDA has oversight of the study.

The hypothesis of the study is that certain immune cells within the cord blood are crossing the blood-brain barrier and altering brain connectivity while also suppressing inflammation, which may exist with autism.

3. Genes

 Autism Speaks‘ MSSNG Project, has highlighted an additional 18 gene variations linked to the development of ASD. Nature Neuroscience Journal, published a report on this project which found that the 18 newly-identified autism genes can be instrumental in understanding the pathways in the brain that affect how cells ‘talk’ to each other. Furthermore, the report talks about ‘copy number variations’ and abnormalities, which are  essentially copy variations found in areas of the genome once considered to be ‘junk DNA’. These areas, full of the copy variations, help to control when and where our genes switch on and off and appear to be crucial to brain development and function.

Genetic sequencing for autism is paramount if we are ever to understand what autism is and  how we can prevent or treat it. Understanding the biological factors that contribute to the condition can lead to better treatments for each individual case, as no two people on the spectrum present the same traits.

4. Mutations

Ten years ago, Michael Wigler and his colleague, Jonathan Sebat, reported that ‘de novo’ mutations (mutations occurring spontaneously) occur more often in people with autism. The mutations they noted were in the form of ‘copy number variants’ (CNVs), deletions or duplications of long stretches of DNA. Data from more than 600 families, they identified CHD8DYRK1ASCN2A as some of the leading ‘autism’ genes.

Right now, 10 years later, researchers pinpointed 65 genes and six CNVs as being key to autism.  “More and more, we are erasing this idea of autism being a stigmatizing psychiatric disorder, and I think this is true for the whole of psychiatry. These are genetic disorders; this is a consequence of biology, which can be understood, and where traction can be made.” says Stephan Sanders, assistant professor of psychiatry at the University of California, San Francisco, who co-led the study.

Conclusions:

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The stigma attached to autism comes from the early link between autism and

schizophrenia. Swiss psychiatrist Paul Eugen Bleuler coined the term ‘autism’ to describe a key feature of schizophrenia. Specifically, Bleuler used ‘autism’ to describe how people with schizophrenia tend to disengage from the outside world. It was not until 1943 that an American child psychologist, Leo Kanner, reclaimed the word for the range of traits we know today as autism. Psychologists Noah Sasson and Amy Pinkham hope to build up a new vocabulary to help disentangle the two conditions in “The social ties between autism and schizophrenia“.

Autism is also commonly misinterpreted as a learning disability. Despite the fact that a good percentage of people on the spectrum may face learning difficulties in addition to an autism diagnosis, or may present the familiar autism symptoms, the two are separate. Intellectual disability, also known as learning disability, is currently defined as a significantly reduced ability to understand new or complex information, to learn new skills and a reduced ability to cope independently. Typically, this is measured by intellectual functioning (commonly referred to as IQ) and adaptive functioning  (day-to-day independent skills), both of which are significantly below that which would be typically expected with difficulties in most, if not all, areas of intellectual functioning and daily living skills.

This is why we need to learn, read and understand autism. Appropriate assessment and formulation can facilitate early intervention and help people on the spectrum get the help they require early on.

Our generation is lucky enough to be living in a time where autism is at the forefront, our stories are being heard and the research is ground-breaking. Stop wasting your time reading about Blac Chyna and the Kardashians and read these reports. Maybe next time you use the word ‘autistic’ you’ll know a more about what it means. Maybe if you learn about autism and teach your children about it, they will be inspired enough to become the ones that solve the puzzle. It may be that you are the one.

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I know you

I’m writing this for the families.

I recognise you when I see you; in the street, at the shop, on the train, at a restaurant. I see you, I know you; we think the same even though we don’t live the same life and  I know you see me too.

You live with autism:

If your kid, brother, sister etc has never told you about their day.

If you have spent the most part of a day repeating one sentence over and over again.

If you wake up and wonder who will take care of them after you die. (If that sentence put a weight on your chest right now)

If the sight of a teenager shaking their hands and hopping in the queue at the shop makes you smile and cry at the same time.

If you find it strange to have a conversation with a five year old.

If you pause before answering “How old is he?”.

If you are an expert on graceful declines for when you get invited somewhere.

If going to a restaurant isn’t something you do for fun, ever.

If you haven’t focused entirely on a conversation with another person in years.

If when you leave the house you carry a bag full of their ‘favourite distractions’.

If you have ever wondered whether they will have a friend.

If you cried when they became teenagers.

If you know what “stimming” means.

If you know what these stand for: IEP, SPD, BCBA, EEG, GF, CF.

If you know what a decompression chamber is.

If you know that achievements mean different things to different people.

If you appreciate ordinary days.

If your answer to “How do you do it?” is a smile.

If you never wonder what you are made of.

 

I’m writing this for the others.

Our children, brothers, sisters have enriched our lives in so many ways.They are fierce, and bright, and beautiful; they make us fearless. They know what they want, and are uncompromising in their pursuit of it; we know what we want and we are ferocious in our pursuit of it for them. They make us better people; because of them we are hungry for knowledge, we have purpose, we have strength and we can face anything.

Here are the top ten things that people who live with Autism, every day, want you to know:

1. Don’t feel awkward when we say they are autistic. Don’t ‘Aww’.

2. Yes, they are different but they don’t need your consolation. Yes, you will need to treat them differently, but they are adored.

3. Don’t say “He’ll grow out of it”. They won’t, the sooner they get diagnosed/treated the better.

4. When you see/hear them on a bus, a plane, the shop, the street, don’t try to discipline them; hell hath no fury like a parent of autism.

5. Don’t stare. I always think I’d love it if the people who stare would just ask me about him.

6. They are children. They are innocent. Their love is so pure and overwhelming. They bring us more joy than hardship.

7.  Give the family support; not pity.

8 . Accept our kids the way that you assume we will accept yours.

9 . Teach your children about autistic children in a special needs class at their school. Ask questions. Educate yourselves about Autism.

10. Remember – every day for us is a battle, a battle we are happy to fight, a battle we will fight forever.

We know you when we see you, so get to know us too.