Valerie Foley

I made this petition and someone asked why…

In Action on January 9, 2013 at 4:24 am

Why did I start this petition on Change.org?

(And yeah, if you want to sign it, I’d be most grateful).

On a personal level, my son is autistic, and he has a range of medical issues.

These include epilepsy, an auto-immune disorder (Transverse Myelitis), chronic gastro-intestinal disorders (constipation/reflux/encopresis), cochlear dehiscence, anxiety and OCD.

Among our peer group of families living with autism, the child without medical challenges is now the exception, and we are not a specifically ‘medical’ cohort.

As an autism parent, the phrase I hear repeatedly from doctors is, ‘It’s just autism, Mum’.

It makes some sense. There is definitely a range of medical issues that can statistically occur in people with autism – GI, epilepsy and anxiety/depression are named most commonly.[1]

However, the ‘it’s just autism’ mindset leads to a very limited set of strategies when it comes to managing, treating or investigating the medical status of an autistic child. ie. Don’t question it, medicate it, live with it.

Beyond the fact that it just seems wrong, as a parent, to medicate your young child for constipation as though they were an 80 year old (for example), a broader question remains.

Why?

  • Why do autistic people have gut issues?
  • Why do autistic people commonly live with epilepsy?
  • Why are metabolic syndromes and mitochondrial disease present in some people with autism, why are the hallmarks of these conditions (not enough for a full diagnosis) present in many others with autism, and why are these discoveries becoming more common?
  • Why do autistic people have more auto-immune and inflammatory responses than the non autistic population?
  • Why are young people with autism finding themselves mental health crises so easily?
  • What are we missing (or ignoring) about this condition?

On a societal level, autism is now the fastest growing developmental diagnosis[2].

From 1 in 10 000 to 1 in 88 in 20 years.

Even with a genetic component, even with changes to the DSM which included Aspergers in 1994, even with an oft quoted (though not reflected in many people’s real life experience) increase in the diagnostic skills of doctors, this rate is alarming.

It is real, and when you live it, it is frightening, because no-one knows how to manage it.

Autism is a behavioural diagnosis made under the DSM. The behavioural component of autism management is only one of the issues for families living with autism, and it’s not one that exists in isolation. Behaviour doesn’t come from nowhere. Autistic kids don’t learn it, they live it.

The medical reality for most families living with autism is complex, largely not understood and principally left up to individual parents to investigate and manage. It is a huge responsibility, requiring terrifying decision making on an hourly basis and truly challenging day to day lives.

As an added bonus, the medical fraternity look on these parents with derision (for the most part), quoting their chosen evidence as the reason. The suspicion that there’s some hidden agenda in the activities of pro-active parents is ever-present, when the reality for most is a life of pure desperation.

Like in any disability, there’s plenty done about autism awareness and acceptance.

These (very legit) campaigns about embracing difference and accepting quirks, are, to a simplistic society, also diluting a very important question.

Why?

  • Why is this happening?
  • Why the acceleration?
  • Why the medical complexity?
  • Are we causing it somehow?
  • Are we aggravating the condition in some way?
  • Can we slow it down?
  • Can we reduce the occurrence?
  • Why are we intent on questioning the credibility of medical practitioners and parents who pose questions like these?

Additionally…

  • Is it a legitimate hypothesis to say the best way to treat autism is to ‘teach’ autistic children to be normal?
  • Is there a biological basis to the behaviours we associate with autism, and if so, should we be addressing them medically?
  • Should there be an imperative to improve the health of children living with autism (children generally, even), and if so, is ignoring the therapeutic possibilities of diet/supplementation a sensible medical directive to give to parents?
  • On that, is the common use of anti-psychotics and stimulants a reasonable strategy when the medical basis of the condition is not yet understood?

In my opinion, we are currently playing an odd game as a society when it comes to autism.

We accept that we don’t know enough, and yet we get all Salem Witch Trial when it comes to the folk who ask questions – as though the questioning process is the problem.

We see our schools filling with children with complex additional needs, and we respond to these needs by questioning the credibility of parents and carers – as though the parents are somehow causing the problem.

We happily acknowledge the warm and fuzzy differences in autistic people, and yet we have no accepted strategies on how the condition mandates they should be treated medically.

We hide behind astutely passive statements about inclusion and acceptance, and use them to justify ignoring an accelerating epidemic among children.

It’s not good enough. Not on a human level, not on a social level, and definitely not on a political level.

If autism was polio, we’d be all over slowing it down. If autism was diabetes, we’d have media campaigns about slowing it down.

There is research, there is mounting evidence, there is rigorous thought about autism as a medical condition. The US Congress are accepting it[3], we should too.

As the parent of one child in need, and the observer of so many more, it seems absolutely crazy to me that we are passively standing by and accepting the inevitability of a future full of potentially avoidable childhood disease and disability.


[1] Apologies for footnoting Wikipedia, but the links off their article are great. http://en.wikipedia.org/wiki/Conditions_comorbid_to_autism_spectrum_disorders

[2] Apologies for footnoting Autism Speaks, but they do stats for the uninitiated well. http://www.autismspeaks.org/what-autism/facts-about-autism

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