Stimming Podcast (May 21 st)

Repetitive behaviours and stimming.

If you read a technical definition of autism, you’re likely to come across the phrase ‘repetitive behaviours’ somewhere in the mix.

On the face of it, that doesn’t sound like very much – but actually, it can be a major part of life. Some people with autism have only a few of these behaviours, and keep them private enough that not many people even notice, while for others, it can dominate their day. Most Autistic people, though, fall somewhere in the middle.

There’s ‘stereotypic movement behaviours’, also known as ‘stereotypes’, which means repetitive physical movements such as jumping, finger-flicking or eye-rolling. Some people with autism also have Tourette’s syndrome, which means a lot of physical and verbal tics.

When you see a person with autism doing such things, you’re likely to hear someone say that they’re ‘stimming’. This, once you understand it, is an incredibly useful concept when it comes to autism – so what does it mean?

Stimming is short for ‘self-stimulatory behaviour’. This means, technically, that somebody is doing something to give themselves sensory input – but what does that mean and is it harmful?

Think of it this way: when most people say something, it’s usually to communicate.  When they do something, it’s usually to have an effect on the world or themselves.  When they look at something, it’s usually because they’re getting information from it.

You do something because you want to achieve a consequence. When someone is stimming, they’re speaking, moving or gazing purely to enjoy the sensation it creates, and the state of mind that sensation produces. It is a self-created sensory reward loop: using an ordinary moment, putting it on repeat, and, basically, grooving on it.

A person with autism can stim on almost anything; it just needs to be something that appeals to them. However, common areas include:

Visual. Staring at lights; doing things to make the vision flicker such as repetitive blinking or shaking fingers in front of the eyes; staring at spinning objects like fan blades.

Auditory. Listening to the same song or noise, for instance rewinding to hear the same few notes over and over. Making vocal sounds, tapping ears, snapping fingers etc.

Tactile. Rubbing the skin with hands or with another object, scratching.

Taste/smell. Sniffing objects or people; licking or chewing on things, often things that aren’t edible.

Verbal. Known as echolalia – basically it’s repeating sounds, words or phrases without any obvious regard for their meaning.  Just liking the way they sound.

Proprioception. This means the body’s ability to feel where it is and what it’s doing; it’s often a sensation that autism can dull. Hence, a lot of stimming involves things like rocking, swinging, jumping, pacing, running, tiptoeing or spinning – all of which give the body’s sense of balance and position a boost.

People stimming can also go through strange-looking physical movements, for instance making faces, stamping, assuming postures that look contorted and uncomfortable from the outside, shaking the head or shrugging the shoulders, and flapping – that is, rapidly shaking or pumping the arms.

All in all, stimming can look very peculiar to people who don’t understand it. Strangers can find it frightening, but in fact the explanation for it is really quite simple: stimming is doing something repetitive for the sensation it creates rather than the result it produces – and that sensation is one that the person doing it finds pleasing.

How do you deal with other people who notice, though?

When it comes to friends and family, explaining and hoping they’ll be understanding is probably your best bet.

Strangers on the street can be another issue; you may want to have some cards to hand out if people bother you about it, but at least passers-by go out of your life relatively quickly. Just ignore them.

Probably the biggest worry is that odd-looking behaviours can attract bullying, and stimming is often among the most odd-looking and the most conspicuous behaviours a person with autism can have.

In cases like that, you may again need to get support from a professional or, if it’s your child, school staff. If it’s possible, the best solution might be to help your son or daughter understand that stimming is a private activity and might be better kept at home rather than at school. Whether they have the verbal and social understanding to take this on board is going to vary from individual to individual, of course, as will how much control they have over their stimming behaviours.

Of course, the ideal thing would be if all their schoolmates were open-minded and tolerant kids, who wouldn’t bully someone for being different. If your child is in a mainstream setting, consider speaking to the school and ask them if they could have classes or talks to help the other children understand autism.

In most cases, though, the rule with stimming should be that as long as it’s not causing problems, you should just let them enjoy it – and ‘looking weird’ really isn’t a problem unless people choose to make it one.

What if my child Is harming themselves?

There are, unfortunately, dangerous stims. Some children slap or punch themselves, knock their heads on the floor or window, bite themselves until they draw blood or, eventually, cause callouses or deformities.

Children with autism often have a high pain threshold and to them, these behaviours don’t always ‘hurt’: a child stimming like this may be doing what they can to get even just a moderate degree of sensation.

Knowing that, though, doesn’t mean it isn’t terrifying to see your child doing something over and over that’s going to create scars or bumps.

If this is happening to you, you need to call in professional help. This can include occupational therapists, clinical psychologists or behavioural specialists: people who can identify the specific root causes and try to redirect the behaviour into something less violent.

While you’re trying to resolve this problem – which really has to be done – don’t neglect your own mental health. Get help for your child, and get help for yourself if you can.

Alleged Cures (podcast May 7th)

Before I start I should say that I absolutely do not condone or agree with any of the alleged treatments I’m going to cover tonight. Equally, I am only giving my opinion on the information provided by the organisations mentioned here.

I recently read an article in The Guardian newspaper this weekend about another magical and scientifically unproven way to “cure” Autism. This made me very angry.  As someone on the autism spectrum, we don’t need a cure because we aren’t sick. Also, there may be some people who are on the spectrum or have Autistic children who will think that one of these so-called cures could help them in some way.

All this does is sell false hope and promises while taking people’s hard earned money. The latest is a holistic treatment called Cease Therapy.

(The following information is taken direct from the Cease Therapy webpage)

The treatment of autistic children and even adults has matured through 300 cases over the last three years and is called CEASE Therapy, which stands for Complete Elimination of Autistic Spectrum Expression.  Step by step all assumed causative factors (vaccines, regular medication, environmental toxic exposures, effects of illness, etc.) are detoxified with the homeopathically prepared, that is diluted and potentized substances that were administered prior to the onset of autism. Currently we use the 30C, 200C, 1M and 10M potencies to clear out the energetic field of the patient from the imprint of toxic substances or diseases.

Obstacles to Cure

So far the main obstacle to cure seems to be the lack of information about the causes of this disease. When important events in the life story of these children and their parents are overlooked or unknown, an essential key to the healing can be missed.

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This in itself seems completely laughable to me. There is no medical or scientific research that backs up any of the above claims. There was only one study carried out by the notorious ex-GP Andrew Wakefield who was struck off and disgraced, and wrote a paper linking MMR vaccines to autism which has been totally discredited in the UK.

The next on the list of ways to cure autism comes from every autistic person’s worst nightmare and the one group that  Neurotypicals think represents us: the website Autism Speaks. It is a treatment called Applied Behaviour Analysis or ABA.

This is taken from the Autism Speaks webpage.

Autism Speaks Autism Treatment Network (ATN) now has a tool kit to help parents work with their children’s applied behavior analysts.

What is Applied Behavior Analysis?

Behavior analysis focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning.

Applied behavior analysis (ABA) is the use of these techniques and principles to bring about meaningful and positive change in behavior.

As mentioned, behavior analysts began working with young children with autism and related disorders in the 1960s. Early techniques often involved adults directing most of the instruction. Some allowed the child to take the lead. Since that time, a wide variety of ABA techniques have been developed for building useful skills in learners with autism – from toddlers through adulthood.

These techniques can be used in structured situations such as a classroom lesson as well as in “everyday” situations such as family dinnertime or the neighborhood playground. Some ABA therapy sessions involve one-on-one interaction between the behavior analyst and the participant. Group instruction can likewise prove useful.

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This is, in my opinion, a form of brainwashing and could be classed as abusive.  I’m sure that the parents are doing it because they care, they love their children and they want to help them. As such, they believe that there is no way they could be hurting their loved ones by putting them through this. Just because you care about someone or have good intentions does not guarantee you’re doing the best thing for them.

The result of this mindset is that Autistic kids are repeatedly forced to do things that are unnatural, uninteresting, and sometimes painful or dangerous. It’s all done in the name of “therapy” – and all with smiles and upbeat attitudes from the therapists. The kids might cry. They might try to escape. They may refuse to take part. But they have to do it, because it has been decided that it is good for them – that they’re being helped.  They just may not be able to see it or understand it at the time.

This is the same kind of conditioning that is used by abusive spouses and religious cults worldwide. Ask yourself – would you agree to put your NT child through this or if your friend’s parents or partner did this to them would it be ok? The answer is most likely “no”.

The final in this trilogy of what seem to me to be ridiculous and downright dangerous ideas out there is by far the worst thing I’ve ever heard of It’s called Chlorine Dioxide or Master Mineral Solution. Desperate parents in the UK, Canada, and USA are reportedly using a bleach solution in a drink in an attempt to cure autism, sometimes in children as young as 2 years old.  My understanding is that Chlorine dioxide (often referred to as simply CD) or Miracle/Master Mineral Solution (MMS) has been touted as a cure to everything from HIV to autism. The bleach solution — and, yes, it is bleach — is typically administered orally, but enemas and a bath are also encouraged procedures.

MMS caused a stir last year when police in the United Kingdom investigated parents for giving the solution to their children to cure them of Autism.

Meanwhile, in Canada, two individuals have been charged with selling MMS, despite warnings from the government.

The popularity of MMS can be largely attributed to Jim Humble, a cultish figure and ex-Scientologist who is part of the Genesis II Church of Health and Healing.

Humble’s church has its roots in and around the Los Angeles area. Secretive groups in that area using MMS were apparently investigated as recently as 2016 by reporters.

Members of those groups believe that autism is caused by a multitude of factors, including viruses and bacteria in the body. Group members believe MMS kills off those pathogens and cures autism.

According to Humble, who says he discovered chlorine dioxide in 1996, the chemical destroys pathogens and poisons, allowing the body to heal itself naturally.

It’s an established scientific fact that bleach is bactericidal, hence its common use as a household and industrial cleaner.

But the practice of using MMS, particularly in children, has been met with collective shock, outside of the fringe groups that promote it.

Dr. Cyrus Rangan, a medical toxicologist and assistant medical director of the California Poison Control System said “This sort of practice has been around for some time and it just sort of crops up now and again when someone supposedly invents a new product that cures whatever disease they say it does,  Usually there’s no evidence for it, but they sort of prey on these families who are just looking for cures or treatments,”

“Any amount of bleach and any concentration of bleach is capable of causing a chemical burn, and so the bottom line is that there really shouldn’t be any exposure,” he said.

In short: consuming or bathing in bleach in any capacity is not a good idea and is extremely dangerous. That goes for enemas and other applications, which can lead to chemical burns on the skin and internal organs.

In my humble opinion this last idea is at least misguided and abusive at worst. It could be classed as grievous or actual bodily harm or attempted murder, and you have to wonder about the mindset of the parents or carers who inflict these kinds of “treatments” on youngsters in a vain attempt to cure someone who isn’t sick.

Thank You

I’d like to take a moment to say a really big heartfelt thank-you, to you all for the love and support you’ve shown me over the last few months,

I took a very big personal risk in starting up a podcast based on autism and throwing my poetry in as well, but the latest numbers have really exploded, which made me feel that the project is worthwhile.

The sales figures for the first two weeks of my book, Scribblology V2, have also smashed those set by my first book. Again, this is down to you guys and I love you for that.

Socks and Sandals

The weather is starting to warm up and, once again, we begin the annual ritual of turning the heating off and opening the windows all day, while sitting in the garden complaining about how it’s too hot and we’re melting. It’s time to put the winter wardrobe away and start digging out this summer collection to wow your peers while on the beach or by the pool.

This was the point that I looked at my summer wardrobe and thought that it could do with a little freshening up. Actually, truth be told it’s the same as it has been for years now – 3/4 length cargo shorts, geeky t shirts, and baseball caps. What can I say? I’m a creature of habit like most autistic people.

So I decided to go to our local department store to get some dazzling new clothes for my summer wardrobe and some treats from their amazing gluten free range of food stuff. It’s while I was dodging the usual old folks who were creeping round the store like a geriatric version of the walking dead, that I started looking at their summer line up and found I actually liked stuff that I wouldn’t normally think goes together, and colours that I wouldn’t normally wear either. By the time I left the clothes section to look at the food, we had bought quite a number of un-Bob-like bits, ranging from pink polo shirts to brightly coloured deck shoes!

It was only when I got home that I realized that I’m getting older – not necessarily wiser, but definitely older. In fact, if you’d told me six years ago I would be where I am in life now, and that I would have a beautiful granddaughter too, I would have not believed you. I’d have said something dumb about never getting old dudes or some other such saying.

The fact is I am getting older and I’m moving in much different social circles now. I also have a responsibility as a grandfather to keep up with, I’m not saying I’m not fun anymore, I’m just learning to dress appropriately too. Who knows what my summer wardrobe will be like in future years. I may be on the slippery slope to wearing socks and sandals, but I’m finally comfortable with that.

Stay Safe X