14 March 2017

Chlorine Dioxide / Miracle Mineral Solution

Across the world, there are parents who don't understand that autism is a neurotype. These parents are led to believe that their child is diseased, and that it's important to eradicate the autism, at any cost. Eradicating a neurotype is an impossibility, but many parents are desperate and willing to try anything.

Chlorine Dioxide (usually known as Miracle Mineral Solution or Chlorine Dioxide Solution), is one of the worst of all the snake oil products. It is essentially an industrial bleach, and parents are forcing their children to ingest it, bath in it, and to endure enemas using this solution as well.

Watch this 20 minute documentary to learn how people are using it, and the current legal state of play.


23 December 2016

Why am I an autistic ally?

I have a few autistic extended family members. One of my cousins in particular had such a negative view of himself that when my daughter (now 18) came along and was so obviously autistic, I was determined that she was never going to feel the way he did.

I raised her to be proud of who she is. I mean, why would I want anything less for her? What was the alternative, self-hatred? Not on my watch! I saw it as my job, regardless of any disabilities/barriers, to prepare her for adult life. And my way of measuring this was always that one day, she would be confident about venturing out into the world, and that's when I would have achieved my primary parenting goal - to raise a confident independently functioning adult.

To me it was obvious that the best way to achieve this was going to be to focus on her strengths, rather than her weaknesses.

I guess the understanding of neurodiversity came naturally to me. Before I even knew words like neurodiversity, I explained to her that everyone is born with their own unique set of interests, strengths and weaknesses. I explained that in some skill areas people needed extra lessons in order to keep up with their peers or achieve greatness if that was their goal (eg: piano lessons, maths tutoring, social skills groups). I told her how she was so incredibly smart, and how as far as I could tell so far, that was an area of giftedness.

From the age of three, her area of deep interest was Ancient Rome. It was incredible how much she knew about Ancient Rome, everything from facts about sewerage systems and architecture, to the intricacies of political marriages. All before the age of five. Who was I to question or suppress something so wonderful? From about the age of eight, she added other topics to her pool of interests, but Ancient Rome has always remained like an old friend. Those are the books we will never discard.

She also loved to come up with amazing stories - when she was a toddler I would sit and type as she spoke, and we would send the stories out to people across the world for feedback. As a teenager she became a star debater, wowing people at the inter-school debating competitions held in the very intimidating Legislative Assembly. By the age of 16 she had already written (typed) half a sci-fi novel about artificial intelligence and consciousness transfer. She now spends a lot of time writing online role-playing stories.

Why shouldn't she be proud of this? How is it conceivable that it could be good or wise to give her a negative view of this depth of skill and intelligence in her areas of expertise? What's wrong with fostering a sense of understanding and awareness of her own unique set of strengths and weaknesses, and working from there?

I also pointed out that we don't have to work on all areas of perceived weakness - some skill areas really didn't matter in the scheme of life. Exposing kids to lots of opportunities to discover interests is a great plan, but forcing them to work hard at an unnecessary skill in an area of disinterest is a pointless waste of everyone's energy.

People grow up and generally end up working in their area of expertise, so this idea of "well-rounded" children is kind of ridiculous. It's an expectation we don't even hold up to adults, so how are kids supposed to achieve it? In my view, a person who excels in all areas is actually divergent (gifted), and everyone else should respect that, but not try to become that.

I could see she struggled with energy levels because of her anxiety and sensory processing problems, so I refused to do too many co-curricular things - over the years there was a bit of speech therapy, a little bit of occupational therapy, a social skills group where kids learned to share, and how to line up, and what personal space is about. There was swimming (which she LOVED), and later a teen confidence group with a local psychologist who does amazing, supportive, strengths-based work. When she was 13 she attended a special physio course to learn to ride her bicycle (it was awesome and she had a lot of fun). In her mid-teens she decided she wanted to learn piano, so there was that too.

I didn't let anyone try to suppress who she was, although that was a hard one, as it seemed to be the mainstream way of dealing with autistic kids - to work towards them being "indistinguishable from their peers". It drove me crazy that people had such a skewed perception of what inclusion means for autistic kids. Inclusion does NOT mean making autistic children mask themselves and forcing them to conform to the social needs of their mainstream peers.

I didn't really understand stimming early on, but I could see it seemed to serve a purpose, and it wasn't hurting anyone, so I left it alone. She still flaps at age 18, and for her it's an expression of utter joy, so I rejoice when I see her doing it!

Pretty early on I realised that hand writing was a big challenge for her, and that it was getting in the way of her producing anything in school. Given what I knew about her ability to come up with great stories, I advocated for technology to help her. It was a long series of battles til I finally won that war in the fifth grade, by providing her with a laptop myself, and getting the school principal to back me up. People continued on and on insisting that she should learn to write, first and foremost. But what they were missing year after year, was that she was so stressed out trying to write that she was producing nothing, and lagging further and further behind. My thought was that in this era of technology, making handwriting the top priority, especially when the individual clearly has a handwriting disability, is just plain silly. (In case you're wondering how I won over the principal - I described it to the school as trying to make the wheel chair bound kid with cerebral palsy walk properly, before she would be allowed to participate in anything else at school. Clearly that would be cruel and ridiculous, and the handwriting was no different.)

During fourth grade she somehow got glandular fever (mono), which developed into severe chronic fatigue. She missed about half of that year of school.

By the time she got to the end of eighth grade, I could see my daughter had some significant gaps in her early childhood learning that were affecting her ability to take on higher level learning. So I decided to home school her to help her catch up and get her ready for years 11 and 12, and for university studies. At home, it was amazing to see her finally relax into learning, and I wished I had done it earlier in her life and avoided all the torment she had been through. We focused on finding enjoyable ways for her to learn a lot of material quickly, and she loved every second of it. She was a learning sponge!

What you don't see much of above is me lamenting how hard it was, how disabled she is, or wallowing in whatever other negative rhetoric. It doesn't mean those troubles, woes, difficulties, battles, tears, meltdowns etc didn't happen, and it doesn't mean they weren't immense and seemingly insurmountable at times. It doesn't mean that you can assume that we have had an easy run of it, or that my daughter is too "high functioning" to be compared to your child's difficulties.

What it does mean is that working from a strengths-based position removes those negative moments from the area of focus. And when those moments aren't the focus, the mind and heart are freed up to focus on the good stuff.

If you're going to spend a large proportion of your adult life on child-rearing, doesn't it sound like more fun to focus on the good stuff?

To me, that's what neurodiversity is largely about. Focusing on the Good Stuff. Accepting that all human beings have their unique areas of strength and weakness, and choosing to focus on the strengths while working only on the weaknesses that are essential for survival. Not expecting everyone to fit some unattainable model of excellence in all areas; being proud of who we are regardless of what neurology we are born with; enjoying our kids; showing empathy towards autistic people instead of forcing them to do things the mainstream way; enjoying the wonders of what diversity brings to the table in innovation, music, art, and so on.

Why am I an autistic ally?

It's really simple: I am an autistic ally because I care about how autistic people are treated. I want less trauma in the childhoods of autistics, and more confidence and success in adulthood. I am also an autistic ally because I care about the wide divisions that have grown within the autism community, and I would like to see us all come back together and work towards common advocacy goals that are good for everyone. I'm an autistic ally because I have ideals and dreams for a better future for all concerned.

Mostly, I am an autistic ally because I think autistics are awesome, and I want the rest of the world to think so too.

To become an autistic ally, head on over to Facebook and join our group.

01 October 2016

...and that's nothing/something to get upset about

- Autism exists and that's nothing to get upset about.
- Autism is genetic and that's nothing to get upset about.
- Vaccinations don't cause autism and that's nothing to get upset about.
- Autism isn't a disease and that's nothing to get upset about.
- Autism therefore can't be cured and that's nothing to get upset about.
- There is no increased prevalence in autism and that's nothing to get upset about.
- Autistic people have empathy and that's nothing to get upset about.
- Autistic people are claiming their identity and that's nothing to get upset about.
- Autistic people are learning to self advocate and that's nothing to get upset about.
- Autistic people have inherent worth and that's nothing to get upset about.
- Aspergers is autism and that's nothing to get upset about.
- The spectrum doesn't have one end or another and that's nothing to get upset about.
- Autistic people have allies that aren't autistic and that's nothing to get upset about.

On the other hand...
- Autistic people are undermined and that's something to get upset about.
- Autistic people are unheard and that's something to get upset about.
- Autistic people are diminished by others and that's something to get upset about.
- Autistic people are often seen as diseased and that's something to get upset about.
- Autistic people are often suffering due to the ignorance of others and that's something to get upset about.
- Autistic people are abused and that's something to get upset about.
- Autistic people are subject to harmful so-called "cures" and that's something to get upset about.
- Governments waste money on pointless research into prevention and cures instead of providing supports to autistic people and their families and that's something to get upset about.
- High and low functioning labels create problems for autistic people and their families, and that's something to get upset about.

23 December 2014

Let's Get Real About Empathy

The world is designed to encourage the comfort of majority mainstream neurology. Our social rules are based on the needs of the majority; our priorities are based on the comfort of the majority; our understanding of others is based on our expectations of the majority.

A member of the majority can move through the world fairly comfortably confident that they are mostly getting it "right". They can pretty accurately guess at the thought processes and emotional experience of most people, because "most people" are similar to them. They can pretty safely assume that other members of the majority are having a similar experience to their own. It's easy to empathise with their own group.

That said, it's also a pretty safe bet that any group with a common neurology is going to find it easier to relate to members of their own group, to share a common experience, and to more naturally empathise with one another.

If I've learned anything over the past 16 years of parenting an autistic person and mixing with all sorts of people in all sorts of settings, it's that if we look through the right lens, autistic people are not as socially disabled as we have been led to believe. It's really just that the majority neurology dominates the narrative, and all social expectations and rules are based on that reality.

The world is not set up for the comfort or success of autistic people, and the majority group has shown itself to be pretty weak at empathising with the experience of autistic people. The majority group likes to think that autistic people are poor at empathising with majority members, but the reality is that every group tends to be pretty poor at empathising with other groups. So it seems to me, stating that poor empathy skills are exclusive to autism is misleading at best.

In my opinion, all people are socially awkward and clumsy when placed in the wrong context, especially towards people unfamiliar to themselves. It's just that the majority group is lucky enough to be born into a world where the context and rules are designed specifically for them.

06 November 2014

London McCabe, Rest in Peace

 London McCabe, aged 6, thrown off a bridge into icy water by his mother.

In response to yet another child-murder death in the autism community. My heart is heavy today.



"Oh but you have to walk a mile in their shoes," they tell us, when sympathising with mothers who murder their autistic babies. In reply to that I must ask, "But do YOU genuinely walk a mile in their shoes?" Because if you think you do, you must at some point ask yourself how bad things need to be before you would consider murdering your child. To walk a mile in their shoes requires you to try to imagine how they got to the point of making that decision, and decide when you would reach that same point.

Where's your line? When will YOU be willing to murder YOUR child?

Let's explore that a little. How bad do things need to be? If your child doesn't talk to you, should they die? If he is withdrawn and seems disconnected, is that enough for you to kill him? Maybe that's acceptable to you. But then, what if she is unable to try new food because it terrifies her so much - is that enough to make you kill her? Where's your line? If he has daily meltdowns, is that enough to tip you over the edge? What if she seems like she will never toilet train - will that make you murder her? If your child never says, "I love you," will that be enough for you? If your child has seizures, is that the ticket to certain death at your hand? Maybe if your child barely seems to sleep? Where is YOUR line?

It is highly likely that you will be appalled by these questions, horrified at the idea of you killing your child, for any reason at all. In which case, I hope my point is made. You cannot walk a mile in the shoes of someone who will take actions that you would never take yourself.

Hopefully if you've read this far, you now realise that the majority of parents find it impossible to imagine killing their children, no matter how hard their circumstances are.

It is never appropriate to say that because a child is disabled, the parent deserves a larger dose of our compassion when they commit murder. No matter how hard we try, those of us who see our children as the wonderful little people that they are, simply cannot understand the workings of the mind of a parent who kills their offspring.

It is NOT POSSIBLE to walk a mile in their shoes. And quite frankly, the idea disgusts me.

RIP beautiful babies. So sorry to see yet another light snuffed out.

27 March 2014

Inclusion Support and how best to use a teacher's aide in a mainstream classroom

Scenario: non-verbal autistic student included in a mainstream early childhood classroom.

In order to meet the needs of this student throughout the day, the school provides a full time one-on-one learning support assistant (LSA).

Student attends school and is generally happy. Relationship with LSA is developing nicely. Feedback to parents is initially positive, and then over time, it evolves into statements expressing concern that the student is "still not speaking", and still not independent in the classroom, as well as not progressing at the same rate as the other children. LSA is concerned that their time isn't being distributed fairly amongst all the students. Further investigation reveals that the strategy to teach the student to be independent has been to leave him to his own devices.

Observation says that he often wanders aimlessly around the room during unstructured activities. He enjoys the other children, and is making connections despite being non-verbal.

What's wrong with this scenario?



Why is the LSA there?
  1. The LSA was hired specifically to support one student. 
  2. Her time is not meant to be spent with the other children, and there should be no resentment about spending all of her time with the individual with identified special needs.
  3. The priority of the LSA should be to spend time with her inclusion support student. If she steps away from the student to allow independent play for example, her time should then be spent creating/working on additional supports for that student, such as PECS (Picture Exchange Communication Systems) and schedules. 

"Unfair"
  1. It is not "unfair" that the LSA is not working with the other students as much as with her autistic student. She has been hired to provide support for one student who needs her in order to cope in the classroom.  Period.
  2. Saying it is unfair is like telling a wheelchair-bound student that it is not fair that the other students in the room don't have wheelchairs, and therefore the wheelchair needs to be shared amongst everyone throughout the day. Clearly a ridiculous idea!
  3. The LSA in this case, is the autistic student's wheelchair, and there should never be a requirement to share her. Without the LSA, (such as when he has to share her), the autistic student is without his "wheelchair" and cannot access learning opportunities.

"Not progressing quickly enough"
  1. Quickly enough according to whom? The pace of progress must be allowed to be determined by the child.  
  2. Adults involved need to learn to set aside their expectations and any inner discomfort and allow things to progress naturally at the pace of the child's abilities. 
  3. Forcing an agenda on the child will inevitably lead to conflict - either in the classroom, or between the teacher and parents, or even at home because while the child might try to comply at school to please everyone, the effort involved could mean exhaustion and meltdowns at the end of each day at home. 

 "Still not speaking"
  1. The child is autistic non-verbal. Why is there an expectation of them to speak at all, ever? It should never be the objective or expectation of a teacher/LSA to make an autistic child become verbal.
  2. Expecting this child to speak is outright discrimination. Part of their disability is lack of speech. You wouldn't be forcing a child with cerebral palsy to walk! This is the same. Let go of this expectation and figure out a way to adapt to the situation.
  3. Verbal speech is not the only way to communicate, and is certainly not always the best way to establish communication with someone who is autistic non-verbal. 
  4. Guaranteed, this student is at least as frustrated as the LSA when it comes to communication. For a start, their needs are not being clearly communicated and therefore also are not being met. If this student could talk, they would be doing it!
  5. Get creative and find a way to communicate with the child - one which doesn't require them to step into your paradigm of communication. Look at visual tools, sign language, ipad applications, to name a few. Think outside the box, research, embrace the challenge of connecting deeply with your student!

"Still not independent"

  1. Independence can only be achieved with scaffolding and a detailed educational strategy. 
  2. When does the teacher expect independence to occur? Who is setting the pace on this? See the above statements about "progressing quickly enough". 
  3. It is a common mistake to expect students to somehow innately know how to be independent. 
  4. LSAs are often removed from one-to-one time with students "in order to build independence". But if the student is not previously taught how to be independent, how are they supposed to succeed? 
  5. In these situations students achieve very little and often even nothing, and this is usually seen as a failing in the child. Very unreasonable!
  6. Removing support to create independence is never going to work. That's like someone being expected to learn to drive independently without an instructor present.
  7. The student may need several years of support before they can achieve full independence. Indeed full independence might never occur. This potential reality needs to be acceptable.

09 February 2014

Food fears!

It has always been hard to get the right foods into my boy. I'm sure that's familiar to many of you. In my son's case, he has a dreadful phobia of trying new foods. It terrifies him, utterly, so I have never really forced the issue. Instead, I've regularly talked to him about nutrition and worked with him to make sure he is getting just enough of the food groups.

Over the years he has occasionally said he is willing to try something new, and I usually try to come up with something similar to foods he already enjoys. Sometimes he will manage to try them, and enjoy them (or hate them). And sometimes he completely freaks out and can't cope. Sometimes this has upset me because I have invested so much time and energy into cooking things "just right" for him. It's hard not to get emotionally involved, but I try not to add that pressure to him of course.

Obviously I have hoped he will eventually get past this issue, but as it's a phobic reaction, I also see that it could be a lifelong problem. 



The whole idea of "if he's hungry he'll eat" doesn't apply. My son truly would starve to death first. He has gone on school camps and not eaten for a full three days, if food wasn't right for him. (I'm sure you can imagine, he is a complete wreck when he comes home). There's a world of difference between fussy and phobic. Phobic isn't rational. Reasonable arguments about why tasting something new is a good idea, don't really break down phobias. A person with a phobia can even accept that they are being irrational, but that doesn't diminish their fear. (I should say too, those camps I mentioned above, in one instance I had actually pre-cooked the meals at home and taken them out to the camp cooking staff, but they didn't present it right, so he had trouble trusting that it was really my cooking. So he wouldn't touch it. The very idea that it might not be trustworthy food was enough to completely freak him out. Suffice it to say I stopped making him go to camps, as they were obviously not a positive or worthwhile experience for him at all.)


He's 15 now, and the other day as he was helping me with groceries, he said, "I think maybe I will try new foods this year Mum. At my age, I really should give it a go." So we went through the freezers at the supermarket and picked out a bunch of Healthy Choice frozen meals, all entirely different to pretty much anything he has ever liked. 


My theory was 
1. He was willing 
2. I don't have to cook them so there's less emotional involvement on my part. 
3. He was willing. 
4. A lot of these meals are softer so he might enjoy them more.
5. He was willing. :)

Here they all are lined up in the freezer. Some of these (the spicier ones) are for me, but who knows? In my dreams I hope he will try those ones as well.

Fingers crossed!


Relax and let them flourish!

My son (15, ASD/ADHD, Anxiety, Sensory), has been spending a lot of time socialising with friends online over this past year. They get together on Skype and voice chat while they play games. Pretty much since that began, he is socialising all the time. Some people think that isn't socialising, but I will always debate that point - it's socialising 2014-style. NT/ASDs alike, are partaking and love it. It also offers a level playing field socially for ASDs, because nobody has the advantage of better body language skills.

Although they aren't in the same room, I think they are learning much better social skills, because they spend so many hours together and have to learn how to regularly negotiate a constructive dialogue. They learn to work as a team. They learn to negotiate through tricky conflict situations. There's a lot of positive peer pressure. They learn how to be self-protective online and perhaps a little more private. On the other hand they are also more likely to share their problems with each other and seek help. I love it.

My son hangs out with a group of about 6-10 peers in voice chat every day. He is the only ASD, and as it turns out, is also often the group leader, as he also is a very talented and creative Game Master in a bunch of roleplay games they like to do together. He works hard at preparing for these, and it's really fun to listen to him, because he is so clever and articulate as he guides their characters through his rich and complex imaginary worlds.

And today, he unexpectedly managed to get them to all leave their computers for a while and meet at the mall. What a surprising turn of events! I never would have expected him to be the initiator of face-to-face contact.

To me, the lesson in here is, if you let someone with an ASD be who they are, and interact in a way that works for them as an individual, instead of imposing some kind of NT "ideal" on them, they will flourish.

So my message to you today is: 


 Let them be themselves, let them flourish!


19 January 2014

Autism Acceptance, not cure. Be on the right side of history.

On the subject of curing homosexuality.
Let's establish the facts:
- Some people want cures for their gay children.
- Many people (particularly gay people) are offended by this.
- People who want a cure are frequently offended by gay people being offended at cure rhetoric. They think gay people should calm down and let them want their right to a cure. After all, their burden is greater, because their child's homosexuality is extreme, so they should have the right to relieve their suffering and the suffering of those around them.

On the subject of curing autism.
Let's establish the facts:
- Some people want cures for their autistic children.
- Many people (particularly autistic people) are offended by this.
- People who want a cure are offended by autistic people being offended at cure rhetoric. They think autistic people should calm down and let them want their right to a cure. After all, their burden is greater, because their child's autism is extreme, so they should have the right to relieve their suffering and the suffering of those around them.

------------

I'm sure you can see what I am trying to demonstrate there. Put any minority group where cure rhetoric has been part of their history, and you can see how offensive and bigoted those statements are. Sure, find ways to alleviate suffering, but recognise that being pro-cure means eradicating an entire neurology, with its own set of strengths and wonders. Sure, it has challenges too, but so does every person on this planet. Your child would no longer be the same person if they were cured. It's that simple. When you say you want to cure them, that's conditional love, and nobody wants to hear that from their parents.

Sure, some people want to be cured. Just because that want exists, doesn't make it less offensive. It just means they have been conditioned, by society, family or whoever, to uphold that same bigotry towards themselves. My belief is that it is our job to help these people feel more self-accepting, and more self-loving.

When a minority group tells the majority that they are being offensive, it is not okay for the majority to then suppress that message, no matter how much you disagree. It is time to sit up and listen. 


I have created the following image for people to copy, use and distribute far and wide. Let's get this message out!



06 January 2014

Inclusion - Indistinguishable from peers?

I have seen the following graphic around at times, and it's a perfect representation of what these various words mean.

 

Exclusion is when access is not granted.

Separation is when access is granted to something else.

Integration is when access is granted to be present in the room, but not to participate as part of the group as a whole.

Inclusion is when all students are granted access to the same opportunities, regardless of abilities, in the same environment.

With proper inclusion in a classroom setting, each person should feel that they belong in the group, they are not being segregated, and they should be provided with equitable access to whatever is needed in order for them to learn.

So in an obvious example, if a student needs their wheelchair and various technological tools in order to learn, those would be readily available. It's a no-brainer, right?

A new graphic is needed to describe what very often happens to students with autism. Here's one I prepared earlier:


In the case of these students, the meaning of inclusion has become distorted. Teachers call it inclusion, but really, the focus is making these students as indistinguishable from their peers as possible. The more indistinguishable, the higher "functioning". The purpose is, in theory, to prepare those students for the "real world".

However, as you can see represented in this graphic, those students will never really be completely indistinguishable from their peers, because they are simply wearing a mask and hiding who they really are.

The equivalent for the person in the wheelchair is having that wheelchair taken away and being told, "No, but you must work on being like the rest of the students. You must walk, at the expense of all other activities and learning." You can imagine the amount of wasted energy and angst experienced by this student.

And the amount of energy and anguish that goes into maintaining the "indistinguishable" mask is extreme. This means that very little (if any) academic learning occurs. In fact, the primary lesson these students are living with, day in and day out, is that they are not adequate, and they must be more like other people in order to be deemed adequate - and that this is the most important thing on which to focus.

So not only are these students not benefiting from academic opportunity, they are also taking a battering at the physical and spiritual level. There is no equity in this. It is harmful. It is wasteful. It is self-defeating for all concerned.


The job of teachers is to teach individuals, each with their own learning requirements. It is not to force the students to conform, to any arbitrary ideal of "normal", nor to a generic one-size-fits-all model of education. Teachers often say there is no time to do more, but I would have them realise that while they are wasting immeasurable energy on making their autistic students pretend to be indistinguishable from their peers, they could be putting (much less) energy into adapting their teaching style to accommodate those same students, without trying to change who they are.

Autistic students are different, not defective, and certainly not less. 

If those students are allowed to be who they are, they will be much happier, they will be much easier to manage, they will be learning more - and perhaps will even be reaching their true potential. And a little bonus is that happier autistic students are actually more likely to naturally develop social skills.

What kind of teacher would you rather be?