What is Autism?

A rhetorical question?  We all think we know what autism is.

It is whatever our personal take on it is. So, for those of us who have children with autism, it’s how they present, their abilities and disabilities, those parts of their personalities affected by their autism.

Is it possible to separate the two things? The person you are from your autism?

Autism used to be called Autistic Spectrum Disorder (ASD) but is now also known as Autistic Spectrum Condition (ASC).

For me, one of the key words is spectrum. Autism used to be easier to define when classic autism and Asperger’s were separate categories. Now, the word autism is used almost as a blanket term to cover everyone, no matter how able or dis abled.  Do you see the spectrum as a circular spectrum? a pie chart or a linear line? However you visualise it, the spectrum is enormous and wide ranging.

‘When you have met one person with autism, you have met one person with autism’.

Every human is unique, every person with autism is unique. There is no convenient term or explanation to label everyone with. Yet, the single word, autism is expected to do so.

In the past week or so, we have had the contrasts of a powerful documentary covering the high functioning end of the spectrum where adults live independently , have full language skills and average or above average intelligence. They want their ‘type’ of autism to be understood better, to raise awareness of a condition which many were unaware that they had until perhaps adulthood. A label which now helps to make sense of how they feel at times.

At the other end of the spectrum, we have a dreadful story of a mother in the media dragging a child through a shopping centre due to his extreme behaviour as part of his condition of severe autism.

But, it’s all the same label.

No wonder there is confusion about what autism means. It is a spectrum of extremes.

There are further definitions within the scale. High functioning versus low functioning. What does that even mean? The ability to speak or not to speak? But, what about non verbal abilities?

Can you move up the scales, like in the class system? Yes, and no.

My boys at diagnosis were deemed to be at the lower end of the autistic spectrum. Non verbal, severely behavioural, destined for residential care.

Where are they now? Somewhere in the middle. They do not have and will never be Asperger’s by any definition. The only label we can try to apply to them is high functioning autism but that label now also means Asperger’s. How confusing is that?

Due to 16 years of a fantastic system, ABA (Applied Behaviour Analysis), our boys are now verbal, able to mix almost undetected in public. They have ambitions for their futures and so do we. The only reason this therapy is not offered to all is cost. Financial cost. There is so much evidence to show how much it helps children at the severe end of the spectrum, we know it works.

And yet, people criticise us mothers for setting up ABA programmes. For ‘allowing’ our children to learn to communicate,  verbally in our boys’ cases.  For giving our children the ability to make choices in life, the ability to communicate their basic needs like hunger or pain.  For helping our children to access therapy which has taken them from being non verbal with little expectations to a place where they are integrated into everyday life and are

HAPPY. Yes, that is a truly important word. We found a therapy to make our children happy about themselves and their lives.

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ABA. VB. SCERTS. What are these?

What do all these acronyms mean and what is the difference between them?
I am not an expert. A BCBA (that is someone with the equivalent of a Masters in ABA) would explain it better but…
My own understanding and experience is that ABA (applied behaviour analysis) is a generic ie an umbrella term for a few different types of therapy. All of which are intensive therapies delivered on a 1:1 basis. All of which can be started as young as two or from when a child is diagnosed with autism. All of which are successful with the right therapists and the right consultant in place.
ABA started out years ago in the form of Lovaas therapy, now viewed as more adult led than child led. It often involved children learning at a tabletop. Twenty years later, some still perceive ABA as being this rather outdated type of therapy.
By the time we started ABA over 16 years ago, there was a newer version of ABA known as VB (verbal behaviour) which was what my older boys all did a version of.  One obvious difference to me at the time was that the emphasis had switched from compliance to teaching communication as the starting point. Communication isn’t necessarily verbal. For some children it means learning to communicate using a form of sign language.
VB came with a new language of it’s own – mands were things children asked for and tacts were things they labelled.  VB could be carried out in any room, in any place, also known as NET (natural environment training). Learning can take place anywhere and make use of whatever is around the child at any time. It should be about helping a child to acquire the skills that children without autism learn naturally. Our children with autism need a bit more help or in many cases, a lot more help.
In an ideal world, all therapy programmes should be run by a BCBA, who has years of training. In an even more ideal world, those Consultants would attend other forms of training such as SCERTS (social communication – emotional regulation – transactional support) or Pivotal Response Therapy and integrate them within an ABA (VB) programme.
In a not ideal world, some local authorities might think that sending staff on one of these courses for a few days make them qualified in this field.  It doesn’t. Only years of training and hundreds of hours working with children with autism will make anyone ‘qualified’ to deliver decent therapy.
We were lucky enough with our youngest son to be able to integrate SCERTS into his VB programme. Although one of its declarations is that it is child led, it is not child led  in the sense of some other therapies which allow a child to do what they want and an adult is expected to ‘join in’. SCERTS is not that . It is more about making therapy meaningful for each child. That may mean teaching a child the names of all the Thomas the tank engine trains and not the names of kitchen utensils (that can come later). In the early days it is about making therapy fun and engaging.
All good programmes, whatever they are labelled,  need to be meaningful. A child needs to want to learn, to want to communicate and to look forward to the therapists arriving, not trying to run away from them.
If a child doesn’t want to engage, then there is something wrong with how the sessions are being run. Trust your instincts, it may be that a tutor and your child do not gel, not that the programme is wrong for your child. Some tutor training or a change of tutor may be all that you need.
Every child is unique and every programme needs to be individualised to each child. If you add learning difficulties to the mix that is autism, the emphasis within the programme may differ greatly from that of a child who has an average cognitive ability.
Our four boys are all very different despite them all having classic autism. They each needed to learn in different ways and their tutors needed to adapt to them as individuals. There is no one size fits all. But ABA was the one thing that not only ‘fitted’ them all, it changed their lives.
Do your research and don’t be overwhelmed by the technical terms. ABA works.
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