Monday, 4 September 2017

Why is support for Autism lacking?

I have often been asked the questions - "why is support for individuals with autism lacking?" and "why do you have to fight so hard for support services?"



There is no hard and fast answer to both of these questions but before I can attempt to answer them, there is a little background information about my little superheroes that you need to know, so bare with me ...........

On the mornings when we are having a rough time at home, I will rarely call the little superheroes school after I have completed the school drop off. I will write in the little superheroes communication books to their teachers prior to school drop off, but I will rarely call.

And the reason is that at school I know that both of my little superheroes will settle, they will conform to what is expected of them and they will both appear to be happy despite the turmoil at home prior to going to school. They both get on with their day despite what had occurred prior to arriving at school. They may need extra sensory breaks or brain breaks as L has taken to calling them, but they do get on with their day.

Prior to gaining L and O's autism diagnosis, we were often accused of providing a lack of discipline and a lack of structure at home. We were often told that L's behaviour was a result of our parenting style. We were regularly asked "are you sure that is how they are behaving?" We were accused of lying or of over exaggerating the behaviours. All of the behaviour was put back onto us as parents - it was all our fault.

I have had to resort to recording videos of my little superheroes when they are at their most vulnerable at home to PROVE what I am describing to professionals. I should not have had to do this and yet, at least once or twice a year, I have to.

And then when we received the final diagnostic reports for both L and O, we had to start proving that the behaviour was occurring all over again. This time to funding bodies.

According to the medical and education professionals that we spoke to, the common denominator for L's poor behaviour was us, his parents. When it comes to a child's poor behaviour it appears to be quite easy for professionals to jump to conclusions and place the blame directly on "poor parenting decisions."

Unfortunately for us, the poor behaviour was rarely seen outside of our home.  

The act of behaving one way at home and another outside the home has a name. It is known as Autism Masking or autism camouflaging and it is more common than you'd think among individuals with autism.

When a child acts differently at school, when they put on the mask, this makes it incredibly difficult to access the support that they desperately need. They are denied access to inclusion services due to their presentation outside of the family home.

Autism is a very complex and confusing (at times) disorder, and yet many individuals learn when they can and can't explode. O is a master of this! O knows that standing out in the crowd is not a great thing to do and L is slowly picking this habit up. They both know that they can show their vulnerable sides at home as there is no judgement from us. They will both internalise their anxieties and frustrations throughout the school day and explode when they walk through the door at home in the afternoon.

Many medical and education professionals have the mistaken assumptions that if a child truly had challenges, the challenges would manifest in all settings in exactly the same way. 

And as a result the consequence of these assumptions is that children are left with little support as they are unable to access the support services that they need and families are left to struggle.



So what needs to change so that our children can access the support services that they need? What needs to change so that the support is more readily available?

In my mind there are two areas in which changes need to be made and the changes more have to do with the thought processes of medical and education professionals than anything else.

The first change that needs to be made is that medical and education professionals need to be more understanding and be willing to listen to a parent when they are describing the way in which a child behaves at home. 

Just because you don't see the behaviour on a daily basis, does not mean that the behaviour doesn't occur.

I am yet to meet an adult who doesn't go home and moan to others to let off steam after a rough day at work. While adults generally don't arrive home and immediately enter into meltdown mode, there are days at work where I am sure that we all put on a mask and pretend that life is great. When we are put into a different environment than what we are used to, we will all change to suit the environment. When we are all put under stress, our coping mechanisms come into play.

Children are no different.

There are many stresses in the classroom that teachers, at times, are not aware of. There are sensory issues that will affect some students more than others. There are the stresses of needing or wanting to conform to the expected norm so that they blend in with the crowd. Then there are the academic pressures that are placed upon students throughout the school year.

All of these stresses alone are enough to cause anxiety to bubble to the surface in any child. If all of these stresses are combined, then you have a recipe for internalising anxiety and a behavioural explosion at home.



The second change that needs to occur is that medical and education professionals need to be much more aware of the many different ways in which autism can present. The saying "so you've met one person with autism" can not be more appropriate when it comes to support for individuals with autism.

When a child does not present autism traits in the manner in which professionals are familiar with, this causes confusion. It can't possibly be autism, can it?

Traits can be seen just as "quirky features" of a child and a parents concerns are dismissed.

A child who makes eye contact, they can't possibly have autism, can they?

Children with autism aren't social, are they?

Every individual with autism presents differently - no two individuals are alike. There are traits that are similar between all individuals and then there are traits that can present as though they are on opposite ends of the spectrum.

Girls will often present autism traits quite differently to that of their male counterparts and this in itself causes difficulty for students to access services and funding.

Girls are fantastic at copying or mimicking their peers and as such girls, generally speaking, are not diagnosed until after the age of 6 or 7 or until they hit their teenage years. Obtaining an autism diagnosis for a girl can be a very challenging process due to their innate ability to copy the behaviour of others.

All professionals need to remember that the autism is a spectrum - a very wide spectrum.

I have two children and both present completely differently to each other. They are alike in some ways but completely different in others.


If these two changes alone occurred then parents would begin to feel less alone and not belittled by the professionals who are meant to be there to support them.

If these changes occurred, then perhaps the support for individuals with autism would increase or be easier to access.

4 comments:

  1. Oh my god! I loved your post about autism. It's a really serious issue and professionals should be more careful with these kids and with their families too.
    I'm sure the situation in your home must be difficult some times but I'm also sure that you love your little superheroes more than anything!

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  2. Thank you for sharing all this information. It seems wrong that you have to keep proving that your kids need help, so I'm hope things will change. I definitely understand about the "mask" kids put on at school. Mine are totally different at school and at home.

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  3. Autism is near and dear to my heart. My nephew was diagnoses at 2 1/2, now 9. My sister has had to fight for every single thing for him. I understand how people try to brush off the behavior and symptoms. Even my nephews own grandparents said the doctors didn't know what they were talking about. He was just developing at his own pace. Thankfully moms (and dads) have a very strong intuition and know when to advocate for their children! Great read, thank you!

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  4. Children are so intelligent. They are constantly learning and picking things up from their surroundings. I think adults, including those doctors who think they couldn't possibly control their challenges, often underestimate how smart kids are and what they are aware of. There definitely needs to be more education about the autism spectrum and how different it can be from person to person.

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