Why are we (still) waiting?
We have finally been given an appointment for our four year old son’s autism assessment, and while I’m glad the 15 month wait will soon be over, I’m left thinking about what a huge disservice is currently being done to pre-diagnosed autistic children and their families across the UK. Early use of evidence-based interventions such as speech and language, play, drama and animal therapies is hugely beneficial to help autistic children reach their full potential. However, during the long waiting period for assessment, many children are being mis-labelled as naughty or disruptive at school and at home, and worried parents are falling prey to quack internet doctors who peddle “cures” for what they frame as a modern disease epidemic rather than a multifactorial and polygenetic learning difference that has always existed, but was not always correctly recognised.
Chlorine dioxide (bleach) enemas, intravenous injection of blood products and exorcism are just some of the abuses that autistic children and adults worldwide are suffering every day. Their parents are so blinded by the pursuit of normality (which is highly overrated by the way- the clue is in the name) that they are willing to risk the physical and emotional health, even the lives, of their autistic children, rather than accept and celebrate their inherent differences. As recently as October 2016 a 4 year old autistic boy in London was hospitalised after his parents took the advice of a naturopath and tried to “cure” him using 12 alternative remedies including silver, camel’s milk and Epsom bath salts.
Now I’m not saying that there aren’t very difficult days or weeks when parenting a child on the autistic spectrum- of course there are. Our children are doing their best to function in a world that doesn't cater for their sensory sensitivities and preferred means of social interaction and communication, which can sometimes overwhelm them and result in behavioural difficulties. However, in inclusive, loving and accepting environments, autistic children are just as able to develop the full range of emotions as any neurotypical child, and may convey them in a variety of different ways. When autism is solely framed as a disease that only causes deficits, or a problem that should be tested for in utero, parents are at risk of internalising this narrative and falling prey to organisations whose stated aim is to erase autism from the world. For me, one of the joys of having an autistic son has been meeting autistic adults who are living and parenting alongside me every day. Their very presence flies in the face of the cold and pathological descriptions in my medical textbooks (and most other literature to be honest), and counters the one-sided story of tragedy and sympathy that too often surrounds autism, with optimism and hope for my son’s future.
Having recently left the NHS after working as a doctor for 8 years, I understand the pressures that NHS trusts across the country are facing as a result of chronic under-investment, and I realise that speeding up the highly specialised process of assessment for autism is not as sexy as reducing A&E waiting times, or providing more hospital beds. But I just feel like something needs to fill the vacuum, and the responsibility shouldn’t just fall on the shoulders of charities and voluntary organisations. Parents of children suspected to be on the autistic spectrum (and the children themselves) need much more support while they are awaiting diagnosis, instead of being left to muddle through on their own until the elusive assessment finally arrives.