Frustration Eating Me Alive! Part 2

Part 1 here

But lately as my two youngest reach the age that it all fell apart for the older two I am starting to feel a frustration at these events.  I am afraid it is my internal conviction that my girls are talented but will never get anywhere.

It is very disheartening to see talent when you know it will never blossom.  All 4 of my girls have high IQs (very), artistic abilities, beautiful singing voices, great acting talent, incredible memories, they have all excelled in a sport, and all of them have natural horse riding abilities.  This is not my opinion coloured by maternal pride; my daughters have been recognised, selected or recommended in all these fields by people unrelated to them by birth.  I don’t mean international stardom of course, local competitions etc.  I don’t mean to say they are the best, just that they are or at least were recognisably ahead of the curve.

Now I’m not trying to pick on singers, actors or other artists.  The great ones have talents that are indisputable.  It is the many artists who are undeniably above average but not buoyed by natural phenomenal talent; those who have worked, practiced etcetera; that I look at jealously.  I don’t put my kids in the sublime category but they certainly have the talents of your average singer/actor (age & experience taken into account).

Because, as we all hear repeatedly, success is not about talent; it is about grit, determination, perseverance and self-confidence.  So I have to face it; we’re out!

To a large extent Autism robs you of emotional strength & resilience that are so prized in our society.  People with disabilities are particularly admired when they overcome obstacles.  But there is little sympathy for the invisible disabilities; mental, emotional & neurological conditions that directly sap the will and attack the confidence.  People who have overcome extreme obstacles financial, social or physical can be amongst the least sympathetic toward those they perceive as not being willing to help themselves.

Not that I want a diagnosis of ASD or mental/emotional instability to be an end point.  What I want is for those whom are asked for support or understanding to realise that the diagnosis is not a ‘cop-out’; it is a more accurate starting point for new endeavours.   The support needed for physical disabilities are more obvious; for example wheel chairs, artificial limbs or white canes.  The supports for mental/emotional problems and especially for a neurological condition like Autism are a lot more varied, complicated & seemingly unlikely, but they are equally valid.

If someone with ASD gets a lot done under supervision and little done alone, for instance, isn’t it worth considering some supervision or look at alternatives that produce the same results.  Some people with Autism, for example, are extremely talented in specialist areas but need a great deal of assistance with mundane tasks.  Society potentially gains far more financially (ignoring moral/humanitarian concerns) by supporting these people so they can be productive in their specialist field.  If a great scientist creating a billion dollar cure for cancer needs help crossing the road who would say no.

One difficulty I have faced in the past is a kind of cat and mouse game medical services seems to play.  Obviously offering support where it is most needed is just plain common-sense, but in practice it can backfire.  Help can be unavailable until the patient is deemed to be sufficiently in need.  Before NDIS (National Disability Insurance Scheme) trials in the area of autism this meant the patient had to be diagnosed and if over 7 years old in imminent danger before they qualified for assistance funding, then they would go on a wait list for therapy services, 6 months was on the short side.  So a minimum of 6 months after the patient had reached a crisis that seriously threatened their (or others) safety they could get help.  Ignoring the deaths that must inevitably, considering the criteria, have occurred, the least problem is that by the time they might start getting treatment a lot of unnecessary, additional to the original damage has been done, requiring a lot more remediation.  And on the other side, supports are withdrawn when the patient gets a bit better.  Or worse after a bureaucratically decreed number of sessions.  This kind of system does not allow for individuals who with minimal support delivered in a timely manner would be able to take their place as capable, productive citizens.  Instead leaving them to moulder as public parasites until depression, guilt or infection make them sick enough to qualify for assistance; not good medicine, and not good economics.  Worse this kind of system creates a yo-yo kind of life where the disabled individual gets worse, qualifies for assistance, waits, get better, is disqualified and the circle continues, except it is not a cycle so much as a downward spiral.

I must admit things are getting better.  I beg people everywhere to consider this when thinking about disabled care.  Easier qualification for assistance coupled with higher levels of self-sufficiency before disqualification (preferably by gradual reduction instead of cut off) may seem expensive.  But in the long term there would be a great reduction in costs by reducing damage which reduces the need for remediation & by reducing relapse due to premature withdrawal of services.  Then there are the great potential financial benefits in increased productivity and innovation.   The benefits to the individual and to society’s soul are incalculable.

Published by autistsix

An autistic woman married to an autistic man trying to raise 4 autistic daughters in a neurotypical world

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