Monday 26 February 2018

Different Ability or Disability?

In recent weeks I've been drawn into the discussion about whether or not having a diagnosis of Autism means that an individual is classed as being disabled.

Our superhero family views autism as a different ability. Both O and L are amazing in what they can and have achieved. Their autism may slow them down but it certainly doesn't hold them back.

Both O and L require support and therapy and to be eligible to receive the support and therapy that they need, autism is classed as a disability. To be eligible for the funding to pay for the support and therapy that they both need at school and in every day life, autism is classed as a disability. Therefore having a diagnosis of autism by medical/funding/government definition means that an individual with autism is classed as having a disability.

However .... if you ask O or L if they are disabled, you will get a resounding no!

Their experience with individuals with disabilities are those that are missing limbs, are in wheelchairs, have cerebral palsy, are sight impaired and have a seeing eye dog - disabilities that are very obvious. When myself or my husband have spoken to O and L in the past about autism being classed as a disability, due to their literalness they themselves don't see their autism as a disability because it does not fit their idea or life experience of a disability.

At the age of 7 years O informed me that having autism means that she has a different ability to her friends.

Both O and L struggle in some areas but in other areas, their skills, abilities and knowledge surpasses that of their peers. Hence our view that autism is a different ability. This is what they both identify with.

They are both very capable and have achieved great things so far in their 8 and 5 years respectively. Last year at school O was awarded 7 honour certificates throughout the year and received an end of year award at the school concert.

The term "different ability" appears to be, as I have recently found out, a contentious issue amongst adults who have been diagnosed with autism. The issue seems to be that the term "different ability" implies that an individual is not capable of achieving to the best of their abilities or that they lack the ability to achieve. Many autistic adults want society to stop viewing autism as a different ability, and start viewing it as a disability.

The number of times that I have been told by autistic adults that I have to stop referring to autism as a different ability and remind my children that they are in fact disabled is getting rather silly.

Having a disability, regardless of what it is, should not stop an individual from achieving to the best of their ability. The disability may slow them down and it may mean that they need to come at their dreams from a different angle or they may need to work a little harder.

Our experience with others perceptions of autism and disabilities in general is that we've been told "but they're normal looking, there's nothing wrong with them" or "the funding needs to be given to those that truly need it. Autistic individuals need to suck it up and get on with life." And if you mention that they have a disability, the voice becomes slower or the assumption is made that O and L are not capable of achieving anything as unfortunately in our society there is still a stigma attached to having a disability.

I think at times we read too much into what a term means. For us, "different ability" simply means what it says - O and L have different abilities to others. It doesn't make them any less or any better than their peers, it just makes them different. And different is good.

After engaging in these discussions, I came across an article on a New Zealand news site.

In 2017, new words were created in a Māori glossary for use in relation to disability issues and I think that the word that was created is wonderful as the meaning behind the word fits our idea of autism.

"Disabled" has been translated as "whaikaha" which means strength, to have ability, otherly abled and enabled.


Mr Keri Opai, strategic lead for Te Pou o te Whakaaro Nui - the national centre of mental health research, information and workforce development - headed the development of the glossary and has said that the word was created with the Māori disabled community and had a deliberate emphasis on gaining strength and ability.

The new Māori word for disabled, fits how O and L view themselves. That autism, while classed as a disability, means that they have a different ability.

Children the world over are the future leaders. We should be listening to how they view themselves not telling them that their ideas are ridiculous. 

So to those adults who want me to discourage O and L from viewing their autism as a different ability ..... no, no I won't. If our children view themselves as having a different ability, then that is how it is. There are enough obstacles for children to jump over or climb through on this journey called life, I'm not going to add another one.

Autism certainly hasn't held up O or L thus far, it has slowed them down and we've made little detours on the way, but it has not stopped them from achieving to the best of their ability. So for the foreseeable future, we'll continue to refer to autism as a different ability.

And on a side note the Māori word for autism is '"takiwatanga" and is translated as "in his or her own time and space!" Wow again.

Thursday 22 February 2018

Why are you so creative?

I am often told "Gee, you are so creative with your children's therapy," or I am asked "Why? Just do worksheets with them, they're much easier!"

To put it simply, children learn through play. Children learn when the play or therapy experience is fun.

Play is fun. If play wasn't fun, then chances are that children would not want to actively participate in the experience.

When we do therapy at home, my mindset is the same as it is when I am creating play experiences in the early learning centre that I work at. If play experiences are not fun, then my charges will not want to participate in them.

The same goes for therapy activities. If they are not fun, I would have buckleys to none at all chances of getting my little superheroes to actively participate.

L would simply dig his heels in and flat out refuse to participate.

O would begrudgingly participate but the session would end in lots of noise and lots of tears on her end.

If therapy at home is fun, then both O and L are going to want to participate over and over again.

To keep therapy activities at home fun, I have three very simple rules.

Number One .... Think outside of the box. Like way, way outside of the box! Sit on the edge of the precipice and ponder just what you could do. Can you incorporate an element of therapy into a household chore? L loves to help to dry dishes so we use the opportunity to practice crossing his mid-line. O loves to help with the vacuuming, so that is the opportunity for her to do some heavy work activities to further develop her sense of proprioception.

Number Two .... Look at the toys and games that your children currently play with, can you incorporate them into a therapy experience? L has more toy cars than he knows what to do with, so we've turned quite a number of them into a literacy game for him. And you know what, it works. He loves "playing" with his letter cars and yet he's learning at the same time without actually realising it!

Number Three .... Whatever you do, don't tell your child that they're actually, shock horror, learning! We've made this error several times with both O and L and the result is groans of "Do I have to? Don't want to! No!" Whereas if you ask your child if they want to play a game, you may very well get a different reaction!

I could easily just use worksheets or force my little superheroes to do therapy but I honestly doubt I'd get very far! Having fun makes therapy a much more pleasant experience for everyone!

Saturday 17 February 2018

W-Sitting - What is it?

**** Please note - If you are concerned that your child sits in a w-sitting position on a long term basis, please seek advice from a trusted medical professional. ****

Prior to gaining L's ASD diagnosis, he would regularly sit with his legs in the shape of the letter "w." I'd often seen other children seated in this position as well but didn't really think anything of it, nor was I concerned about it.

L occasionally still sits in this position, especially when he has had a rough day, and I've since learnt that it really isn't the best position for children, or adults for that matter, to be seated in.

O also sits in this position on an occasional basis but not nearly as regularly as L does.

L's sitting position is a regular topic of discussion between ourselves and his Occupational Therapist. Over the past several years we, and his Occupational Therapists, have been doing a lot of work with L on sitting in other positions and on strengthening his core muscles.

So for those that aren't in the know, what is w-sitting?

W-sitting describes when a child is seated on their bottom, with their knees bent and legs splayed out to their sides in what looks like the letter "w." It looks awfully uncomfortable but L prefers this seated position to the more conventional crossed legged position. I've attempted to seat myself in w-sitting to demonstrate what it looks like and have had a lot of difficulty sitting down and getting back up - although this could be due to my age and lack of flexibility!

Children will often prefer a w-sitting position to sit in as opposed to other more challenging and tiring positions. The reason for this is that when seated in a w-sitting position a child does not need to engage their abdominal muscles. When seated in the more conventional cross legged position, a child must engage their abdominal muscles to stay upright.

When L sits in the w-sitting position we can see that his body appears to sag onto the floor. Now that we know what to look for, we can see that he doesn't engage his abdominal muscles at all. And he can sit in this position for longer periods of time with ease than other positions. When seated in the more conventional cross legged position, L tires easily as he has to engage muscles to stay upright. When seated in a cross legged position he needs to move around on a regular basis to offset the uncomfortable feeling that he gets from his tiring muscles.

Sitting in a w-sitting position provides a very stable base for the child's trunk and hips and therefore allows a child to move easily to play on the floor. However the movement is generally in a forward and backward motion as opposed to moving and turning from side to side. 

The tricky thing about the w-sitting position is that many typically developing children will, at some stage, sit in this position. What most parents, myself included prior to L's ASD diagnosis, do not realise is that excessive use of this position during a child's growing years may lead to future orthopedic problems.

One of the issues with the w-sitting position is that it does not allow or permit a child to perform trunk rotation, or twisting and turning, and lateral weight shifts, side to side motion, to reach toys on either side of the body.

The development of trunk rotation and weight shifts over to one side and to the other is vital in children as both assist in maintaining one's balance while running and walking as well as when climbing and playing on play equipment. It is also necessary for being able to cross our mid-line when writing, drawing, turning pages on books, dressing oneself and other similar skills.

Sitting in a w-position on a long term basis may cause orthopedic issues in a child's hips, knees and feet as well as tightness in the leg and hip muscles. I'd never made this connection until speaking with L's OT but it does make a lot of sense as the w-sitting position itself doesn't look like a natural position to sit in as the joints are bent in unnatural ways. Although in saying that L makes it look very natural!

If a child sits in a w-sitting position once in a blue moon, there is really nothing to be concerned about. However when it occurs on an ongoing basis, the child really should be re-directed to sit in a different position so that any potential issues with their joints and muscles are avoided.

So what alternatives are there I hear you ask and what are the benefits of other sitting positions?

Side sitting - This is when the child sits with bent knees and both legs are out to one side, one leg will be tucked under the child's bottom. If seated in this position, the child should really be encouraged to swap legs from side to side occasionally so that the muscles don't become tight on one side of their body. This position allows a child to maintain flexibility in their hips but it also forces a child to engage their trunk muscles!

Cross Legged sitting - This is the more conventional sitting position used by most children. They are seated on their bottom with their legs crossed in front of them. It is often referred to as "sitting with butterfly legs" or "criss cross apple sauce" legs! This is an ideal sitting position as it assists in stretching the muscles in the hips that can become tight with persistent w-sitting. It also assists in strengthening a child's abdominal muscles.

Circle Sitting - This is very similar to cross legged sitting however in this position the legs are not crossed but instead they form a ring in front of the body. Sitting in this position increases a child's base of support and therefore provides them with greater stability. This is a more stable position than cross legged sitting and is great for children when first learning to sit. Babies will often sit in this position to begin with as it is quite a natural way to sit.

Long Legged Sitting - This describes when a child sits with their legs straight out in front of them and slightly spread apart. Seated in this position can help in stretching a child's ham strings. It takes a lot of energy for a child to sit in this position if they are not used to it and if the child struggles to sit up tall or they need to lean back on their hands for support, it can be an indication that their hamstrings are tight.

Sitting against a wall - This position looks exactly like it is called. The child sits against a wall, or furniture, with their legs straight out in front of them. This position provides a child with the extra stability that they may need but also assists in stretching their ham strings.

We also encourage L to sit on a wobble cushion as he can move about if he needs to but he also needs to engage his abdominal muscles as he wiggles about on the cushion. He actually prefers to sit on the cushion as he sees it as a game! The wobble cushion is a win-win option - L has fun but he's engaging and strengthening his core muscles at the same time. Make therapy fun and children will want to participate!

As mentioned earlier, L's Occupational Therapists have been a god send in suggesting other options for L to sit in as well as other activities for L to engage in. We do still allow L to w-sit as he is incredibly comfortable in that position but it isn't on a long term basis. L is now at the point that when he does sit in a w-sitting position, he will often self correct.

And as mentioned earlier, if w-sitting occurs once in a blue moon there really isn't anything to worry about. It is a behaviour often seen in typically developing children. But as with other ASD traits, when it is an ongoing behaviour or action, that is when we need to be on the look out for options to redirect the child to use.

Tuesday 6 February 2018

The Traits of ASD that I love ....

I was asked recently to list one of my little superheroes ASD traits that I really loved.

And to be quite honest I was well and truly stopped in my tracks. Not because I couldn't think of a trait that I really loved. I was stopped in my tracks because there are so many of my little superheroes ASD traits that I truly love.

I love O's dry sense of humour. At times O's sense of humour seems to be beyond her years. A few years ago she had one of her teachers at school in stitches with a speech that she gave to her class. And another of her teachers loved having O in her class, as O got ALL of the jokes that the teacher made. O would be sitting in the class giggling away as her classmates didn't know what to do!

I love O and L's innocence and their absolute honest approach to life. A life in which they expect everyone to do the right thing. And when someone doesn't do the right thing, they are horrified. I don't want either of my little superheroes to lose this honest approach to life, I do want them to become a little more world wiser.

I love L's determination in every thing that he does. He never gives up! L approaches every situation with enthusiasm and a can-do attitude.

I love the affection that both O and L show to us, to each other and to others. They have their moments when they just don't want any affection what so ever, but every now and then they both give me hugs just because. And they are BIG hugs that literally knock me off my feet and the wind out of my sails.

I love their honesty. Neither O nor L can tell a lie to save themselves - it is written right across their faces. Their honesty shows in their eyes. We don't keep secrets in superhero headquarters, but even if we did neither O nor L can keep one! If you buy a present for someone in our family, don't tell O or L, because nine times out of ten, they will let slip what the present is.

I love the empathy that O has always had towards others and that L is developing. It does not matter if they have known you for five minutes, five days or five years, they will both show concern. O shows concern for people that she hasn't yet met!

I love the attention to detail that they both have with their obsessions and interests. The facts and figures, the names, the descriptions, their willingness to tell anyone and everyone what they know about their obsessions and interests. Their willingness to correct us when we get something wrong!

I love just how literal that both O and L are. Literal in their thinking and how they process and carry out tasks. Their literalness makes me rethink how I approach tasks and how I speak with people on a daily basis.

I would not change a single thing about either of my little superheroes. They are perfect just the way they are!