Saturday, 5 September 2015

Autism in Northern Ireland - it's a shambles like it always was

There really isn't anything positive to say about autism services in Northern Ireland today. Things have and continue to become progressively worse.

Waiting lists for diagnosis are as long as they ever were, with some children waiting years and some adults waiting forever (never).

A couple of years ago the government attempted to strategise, develop and streamline services from all 12 departments but due to lack of interest, lack of participation and lack of money, it all fell apart.
Autism is one party to which few want an invitation and fewer rsvp.

For every statistic showing a year by year increase in the prevalence of autism both in Northern Ireland and worldwide, you will find an attempt to argue the opposite, usually in the form of an on-line harpy or self made, self important "expert" who believes the rising rate of autism is a result of better diagnosis. Northern Ireland has copped on to this. If they don't diagnose, the numbers will fall. Hey presto and voila! Problem solved. (Prevalence remains untouched by this, but who is interested in facts?)

Many parents give up altogether on obtaining a diagnosis for their child. For those who continue to pursue one, they face waiting lists which are now years long. The system can't cope so it shuts down.

Eventually, after years of un-managed, un-treated, and undeniable autism, so will your children. 

If you suspect your child may have autism and you live in Northern Ireland I wish you and him/her the very best of luck. You are going to need it. There seems to be an unspoken rule (pact) that referrals for diagnosis will now not be accepted for any child in N.Ireland under the age of three years. By the time a child receives such a diagnosis, they will be four or five years old and often much older. 

Meanwhile, thousands of autistic adults in Northern Ireland, (together with their parents), struggle to survive with little prospect of further education, employment or social inclusion/participation.

These are the individuals who you might want to start talking to. You can find many autistic adults in care facilities province wide. Ask them if you could speak with them or their carers. If you have any journalistic ability, ask to interview them about their lives.  Other autistic adults may live next door to you.Some live with their parents, some live independently. You know who they are by now.

Reach out to them and their parents. They won't waste your time filling your head about how autism is precious and special, or how your autistic child is a fully fledged member of the "neurodivergent" community. Their experience and lives are a mirror to what lays in store for many of you and your children. Do you want to know how hard it is for some autistic people?  If you knew, would you walk away in denial telling yourself your child and you are different?

If that's too difficult for you right now, by all means continue to buy bracelets, paint your nails or tattoo yourself with autism logos and climb mountains for fat cat autism charities. If they keep you busy enough raising money for them and their salaries/egos,  at least you have less time to worry about the future. 

Saturday, 6 December 2014

Northern Ireland Autism Charity reacts to public criticism of misleading "awareness" information

Dear Autism NI/PAPA Charity

Thank you for promptly removing your offensive "Spot the Difference" (Spot the Autistic)  web page depicting autism as something to be detected via fashion and/or demeanor.


I, and many others, have no idea what possessed your organisation to encourage the public to go "autistic spotting" in the first place or to what end.

It is very worrying  how "Northern Ireland's Autism Charity", one which has been in existence for over two decades could make such a grave and fundamental error in the first place. Have you overlooked the basics? How did this happen?

Your organisation boasts of providing training to the Police and other emergency responders. Did you furnish them with your "Spot the Difference" hand-out? This would bring a new meaning to the term "fashion police". Please assure us that the erroneous information originally posted  (see photo above) in your Top Tips website was never used as a training resource or that other wrong information is not incorporated into your parent and other training packages.

You declared, that following public criticism of your original "Spot the Difference" page, that you submitted the page to your ASD Focus Group. Was that the same "Focus Group" which came up with the original page?

The replacement isn't really much better. Please send it back to your colleagues within that group and ask them to think again about the text accompanying the new photo.

Can take words and phrases literally
May be anxious
Can be rigid or routine bound
Unusual behaviours
Lack of facial expression
Little interest in small talk
Difficulty understanding others points of view
Sensitivity to sound
Extreme honesty
Special interests or obsessions
Often knowledgeable & driven on certain topics