Please tell a little about yourself and your role with autism in Ireland.

I am a parent of 2 children with moderate to severe autism. My daughter also has OCD/ADD. I manage the website, write the Blog, and lead a face book group for Irish autism Action. The Face book group enables people who are unable to attend face to face meetings; either through distance, circumstances such as the lack of support and the severity of their child's autism, or shyness; to “meet” other parents and share their experiences.

workblog http://irishautismaction.blogspot.com/
personal blog
http://hammie-hammiesays.blogspot.com/

What is the prevalence of autism in Ireland (if known)?

Study has only just been launched. Basically we work on 1-150 until proven otherwise.
http://www.autismireland.ie/detail.asp?ID=229

Within the general culture of Ireland, how aware are people of autism? How accepting are they of autism?

People are anecdotally more accepting than you would find in other westernized countries. You get a lot less of the “look” in Ireland but you still get a bit of it.
The “look” is when a bystander looks at you as if you are a bad parent with an un-ruly child.

Within irish autism action, we think we are reaching people and raising awareness and thanks to our political campaigning – in support of Behavioral Analysis, we had a disproportionally high profile.

But as to what autism actually is? I think we still have a long way to go.

What are the largest struggles for people with autism in Ireland? Is there a story you know personally that demonstrates this struggle?

There are too many. Every day there is a child being excluded from a mainstream class because the teacher and the school are unwilling to adapt their teaching to suit a different learner, or allow for qualified assistance.

There are the children put into 6-1 services with a state trained teacher who knows the “national curriculum” but has had less than 2 months training in what autism is, let alone how to teach a kid to learn. These services are poorly supported by qualified clinical therapists, and the support is poorly managed and intergrated so it is effectively wasted. The children may have assistance with feeding or going to the toilet, but there is no one who will teach them to use the bathroom independently or to make food and feed themselves.

There is no one to identify their needs and abilities and break down a task to teach them that they individually learn.

And any behavioral challenges they have will go unidentified and may even be compounded or inadvertently encouraged by poorly trained personel.

The children are out of the house for 5-6 hours per day, depending on transport arrangements and the parents get some respite; but the damage done to these children by merely “minding them” at best, and actually causing them to develop more challenging behavior has life long implications.

Where do these children go when they turn 18 and there are no more “school” placements available and their parents cannot cope?

We are talking about life-long institutional care with no possibility of qualified intervention. We are talking about a loss to the community of the potential of a person, who may have been a huge contributor to society.

What have been some of the greatest successes in Ireland in regards to autism?

We have 13 State funded ABA schools that provide tailored and measurably intervention to over 200 children.

However, there are 4 times as many children waiting for a place in these schools.

So we have another 10 or so that are parent funded and awaiting recognition.

Half the children who attend these schools go on to typical mainstream education. They will go on to secondary and tertiary education and grow up to find work and pay taxes.

The other half will remain in the specialised system but will develop life skills and and independence which contributes to not only theirs, but their entire family's quality of life.

This is the only proven method of overcoming the challenges of having autism, or raising an autistic child. Every cent spent on tailored behaviorally driven intervention in a comprehensively managed and supervised environment is a cent towards improving the potential of someone with autism.

Both my children attend one of these schools after a four year wait and our lives have changed totally as a result.

We have a Autism/Child friendly Centre based Diagnostic Service that can get an answer for a worried parent within 3 months. The Solas Centre will provide a diagnostic assessment in consultation with a Speech Therapist, Occupational Therapist and Psychologist working together. The report will identify and recommend the most beneficial intervention suited to the individual child.

The centre also provides information, support and counselling for the parents of children with autism.

What types of training and assistance are needed in your country to improve autism awareness and services?

We have the knowledge and we have the qualified instructors to impart the knowledge. We have highly educated and willing students to learn the techniques needed to work with every child in the spectrum. And we have qualified supervision.

We just need the resources to expand our school network to reach every child on the Island of Ireland, and we need the will to co-operate from existing health and educational bodies to ensure our efforts have the most benefit to the general educational community.
We should be providing outreach but the establishment refuses to acknowledge our expertise – and many children and young adults who we could have discreetly supported to stay in the mainstream education, fail and end up in state funded learning disability services or services for the “emotionally disturbed”. This is a failure of the system, not the child.

We also need the resources to utilise our training and experience in the provision of qualified home and centre based respite and home support. To ensure that families get practical and qualified support, training and intervention from the day of diagnosis.
We do not presently offer this.

We also need to provide a better network of communication and support for young adults with autism, and to identify and provide for their needs. We also need to include them in our planning and service provision decision making.