Autism: It must be something else

So many times in the early days of post diagnosis I would read stories online or on message boards of people whose children with autism were suffering serious medical problems. People would endlessly discuss seizures, severe gastrointestinal problems, medical neglect and other horrific issues that often accompany this disorder.

Despite our son's intellectual disability and his mysterious behavioural and physical dysregulation issues for which we have no answer medical or otherwise, we would still consider ourselves one of the lucky ones. Because in my 3 short years on this road I have, by now not just read about the horror stories on message boards but met them, spoken to them in person and witnessed their frustration.

Kids who will have strange episodes where they fall from standing, go in to complete brain death for a few minutes, their bodies becoming like dough, recovering shaky and confused. Neurologists shrugging their shoulders, not able to diagnose these as seizures because EEG's were "normal".

I know two such children. Both of them have very different circumstances and are very different in their functioning, and the medical community will not acknowledge their illness as directly related to their autism.

I thank God every time I talk to their parents that we don't have this in our house.

I also live in a kind of fear, for my little girl.

Because along with these stories are also stories of children who were developing typically until age 18 months, or 2, or 3 (it varies from story to story) and then one day a throat infection developed, the child went into a coma and their mental health deteriorated from that day onwards. Or the child had a vaccine, got seriously ill a few weeks later and regressed to an autism diagnosis. In all cases, parents distraught, confused and baffled. Many of these families dealing with a strange sense of loss for years (strange because they haven't really lost a child, but in fact they have, because a once healthy, speaking, interacting, happy child transformed in to someone else).

Its one thing to read articles and emails and another thing to actually speak to a family describe their child's before and after. I wonder did that child really do all that their mom is saying when they were younger? Its hard to imagine when you see them now at 7 or 13 or 10, unable to speak or engage in any interaction.

It keeps me up at night, and I have irrational thoughts of never leaving my house to protect my daughter.

I no longer debate with myself if K's physical dysregulation and learning disability is a result of underlying medical issues he may have, that mainstream medicine has yet to identify and relate to his disorder. I have already accepted that conclusion and I would rather spend my time trying safe, easily available solutions, that my family can financially afford.

But the fact remains that the large numbers of children seriously suffering every day of their lives, being medically neglected and their medical issues not acknowledged as linked to their autistic disorder are a testament to the chronic misrepresentation of autism spectrum disorders.

I believe in an after life and I am generally very optimistic about the plan of God. I wonder however what drives people to vociferously defend autism as something to celebrate and preserve.I celebrate God's love for me that He chose to guide me through whichever means He thought best. I celebrate the progress of my son and his beauty. I celebrate human beings who are able to find beautiful expression DESPITE their autism. I celebrate being alive and able to be a mother and have a family. But I denounce delusion and denial. Most of all I reject oppression, injustice and neglect.

When will this attitude change? When will autism spectrum disorders be considered a serious medical illness that deserves money being spent on researching cures to the various symptoms so many autistic individuals suffer from?

This attitude of "autism is not a medical problem but must be something else" (such as statistical anomaly, a different point of view, personality disorder, natural selection, consequence of nerds mating, purely genetic and other ridiculous nonsense) has to change to do justice to the really vulnerable individuals and their families.