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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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Hope in Poo

(One of) my New Year’s resolutions was to read more non-fiction books. I just finished a book about Pablo Escobar and now I’ve moved on to a nurse’s recollection of what it was like to be a nurse in the 50’s.

Both post-war Colombia and post-war Britain made the current politics scene more real than ever. People had just gone through a wars that left thousands dead, they lived in fear for years and in the end they thought it would never happen again.

IMG_5933And then these guys come along. In times like these it’s easy to give up and it’s easy to overlook hope.

So, I’m going to start a monthly hope write up. This month’s hope can be found in poo. That’s right, our world is so effed up that we can now find hope in poo.

On the 23rd January, a study was published in the Microbiome Journal (here) which claims that 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) alters gut ecosystem and improves gastrointestinal and autism symptoms. The investigation involved 14 days of therapy with oral vancomycin (an antibiotic used to treat a number of bacterial infections) followed by a 12- to 24-hour fast (clear liquids only) with a bowel cleanse using MoviPrep (laxatives). On day 16, to repopulate gut microbiota (the ecological community of commensal, symbiotic and pathogenic microorganisms that literally share our body space), a high initial dose of standardized human gut microbiota (SHGM) was given either orally or rectally for 2 days followed by daily, lower maintenance oral doses of SHGM coupled with a stomach-acid suppressant for 7 to 8 weeks. The stomach-acid suppressant was used to increase survival of SHGM through the stomach. The children were followed for an additional 8 weeks after treatment ended.

What?

Basically:  18 patients aged 7 to 17 years who had ASD and moderate to severe GI problems were given antibiotics for bacterial infection followed by laxatives for 14 days. Then, they were administered a high dose of a range of microorganisms for 2 days. Followed by a lower dose of said microorganisms and stomach-acid repressants for 7-8 weeks; which helps the microorganisms survive longer.

ASD-related symptoms improved, as reported by the Parent Global Impressions-III (PGI-III) assessment, which evaluates 17 ASD-related symptoms, showed significant improvement during treatment and no reversion 8 weeks after treatment ended.

One of the many theories about where autism comes from has been the gut. That’s why we use gluten-free and casein-free diets as 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.”

What this study proves, on a small scale, is that perhaps cleaning the gut of neurodiverse people from the bacteria that the body does not keep in neurotypical people could be the one of the answers we have been looking for.

Hope.

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Projects for Autism – Swimming

Aquatic Therapy consists of treatments and exercises performed in water for relaxation, fitness, physical rehabilitation, and other therapeutic benefit. 

893047_1403665643207548_1079878709_oLaurie Jake, “Autism and the Role of Aquatic Therapy in Recreational Therapy Treatment Services” – “This pressure actually soothes and calms the children, providing the necessary sensory input they crave.”

An article by Hear Our Voices states that “a majority of clinicians reported a substantial increase in tolerating touch following aquatic therapy.”

Imagine a world where you did not see, hear, smell, feel and taste the way everyone else does; a world where lights and sounds bombard your senses.

This is often the world of Autism; it involves many cognitive consequences including; problems with verbal communication,  concepts and explanations, literal understanding, delayed processing to name a few. Children with Autism often focus on detail, hey have trouble understanding causes and effects and are usually not able to understand the concept of time causing confusion when you have to deal with their organisational and sequencing demands. We are always looking for ways to keep them moving, not fixated on one thing for days, we try to incorporate as much as we can in their routine, making it flexible and recreational. 

Recreational therapy can play a significant role in enhancing the quality of life and productivity of a child with Autism. 

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Among the vast range of interventions is one that we believe to be unique and very successful; aquatic therapy. Water activities provide autistic children with coordination and tactile input. As I’ve mentioned before, children with Autism have sensory difficulties, and are very easily distracted by these difficulties, whether it be because of pain, annoyance or fascination. There is an over or under reaction to stimuli in the environment they live in and have very strong reactions to certain textures, tastes, smells. We’ve found that water provides a safe and supported environment, which not only supports Chris, but also provides him with hydrostatic pressure that surrounds his body in the water. This pressure actually soothes and calms him, providing him with the necessary sensory input he craves. Aquatic activities are a fun and enjoyable experience that has many physical, psycho social, cognitive, and recreational advantages. Water is the ideal medium in which to exercise or rehabilitate the body; it’s an environment that reduces body weight by 90%, decreasing stress or impact on the body; and these are benefits for everyone!

For children with Autism aquatic therapy can be a play-based movement, improving range of motion, helping to facilitate neurodevelopmental growth, improved body awareness, increased balance, sensory integration, mobility skills and most importantly, having fun. The Aquatic Therapy and Rehabilitation Institute defines Aquatic Therapy as “The use of water and specifically designed activity by qualified personnel to aid in the restoration, extension, maintenance and quality of function for persons with acute, transient, or chronic disabilities, syndromes or diseases“. 

200273_6950080029_9968_nWith Chris, we found that the water (pool or beach) provides a safe environment for him; it feeds into his sensory demands and he is much more tolerating to touch. Another positive is that the energy required to swim around, move or the activities in the water helps with hyperactivity; which means that he is more cooperative, and has better concentration. Swimming can also help with developing social skills. Everyone makes a friend at a pool or a beach, whether is a ball gone astray or just curiosity. The point is that it puts Chris in a position where he is calm and therefore open to interaction. Now, if you use swimming as a therapy, which is highly recommended during the earlier years of development, social skills can be engaged in during group aquatic therapy sessions with specific skills targeted by a trained professional. Group sessions mean, not only having to work with the therapist, but with group mates; sharing toys and equipment, experience cooperation, initiating/maintaining eye contact as well as increased self-confidence promotes self-esteem, preparing them to successfully engage in interpersonal relations. 

Parents, it may be scary thinking about it due to the significant safety risks when in the water; lack of response to verbal commands, and their distracted nature can be a big worry.   But this is why it is important to incorporate swimming in their flexible routine from a young age. Leaving aside the numerous and obvious advantages, it is essential for them to be    comfortable around water, alert and educated about the dos and don’t s. Exposing children with autism to aquatic therapy can evolve their swimming skills and their understanding  of safety around water.

 Living with Autism is a journey. We never stop learning, there’s always something you can do. So be creative, be brave, swim.