Diagnosis: What Then?

20150422_DiagnosisWhatThen

by @FASD_Mum

When our son was first given a diagnosis for Fetal Alcohol Syndrome, the knowledge shocked, immobilized and burned as it began to sink in. Day by day, month by month, we absorbed the news that our son’s brain had been damaged while in utero, and all the therapy out there could not change that fact.

It’s now one year later, and we are emerging from what I believe was a depression brought on by the news.  We continued to function, somehow.  We continued to seek out information. We continued to do everything we could to make our son’s days productive, educational, and full of love. But we were also told flat out that day that the UK has no “post-diagnostic protocol” for FASD.  In the same session where we were told that our son had irreversible brain damage and would need support for the rest of his life, we were told there is essentially no medical help available.  A year later, that still boggles my mind and, if I am honest, leaves me bitter.

Fetal Alcohol Spectrum Disorders are not ‘new.’  They are widely studied and understood in other leading developed countries. UK policy is sorely out of step compared to countries like the US and Canada, where it is taken seriously.  The excuse given is that there is not enough UK data upon which to base policy.  That is a cop out. Fund the studies. Fund the clinics that have the expertise to provide a diagnosis. In the meantime, there is enough known about its prevalence to immediately begin to meet the needs of those kids in the population who through no fault of their own bear the weight of this hidden disability.

It is inconceivable that in this country that prides itself on its pub culture, that every GP is not given proper training on how to spot the symptoms.  It’s inconceivable that alcohol is not properly labelled, and that young women are not educated on the dangers their nights out might pose to their unborn children.  It is inconceivable that educators are not given mandatory training in how to address the needs of these kids, who can have difficulties with executive functioning. The excuse is of course that there is not enough data – but I would bet my life that if a proper assessment were done every single larger school in this country has undiagnosed children under its roof.

It is inconceivable that parents who have waited years and years to understand their child’s problems can be told that their child faces a lifetime of disability – but that there is no medical protocol on how to address that brain damage.  We have had not one additional intervention from the NHS since that day. We have been the ones to bring educational materials into the schools.  We have been the ones to dig deeply on the internet to begin to find the pockets of hope (despite being warned by UK experts to stay away from North American sites as the information is ‘not relevant’ here in the UK – which is of course ridiculous, since science transcends international boundaries ).

We have been told to accept the test scores slapped upon our child, despite the known weaknesses of those standardized tests on kids with attention and cognitive problems, and without any sort of additional help being offered on how to maximize his potential.  We see the statistics on how many of these kids grow up to have drug and alcohol problems or end up in jail.  It is inconceivable that the government doesn’t think it worth the time or effort to put in place proactive measures that could help prevent this cost to society.

Our son is sadly not as unique as he is made to be.  If he were missing an arm or a leg and not some neural connections in his brain, if he were blind or deaf the ‘system’ would be addressing his needs.  It’s time for the UK to face this unrecognized and totally preventable epidemic.

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