We need a National Autism Empowerment Strategy to correct the mistakes of this state and to embed here the international best practice of others
Notes were being taken.
When a family who are adjusting to the realisation of a challenging diagnosis come into contact with the services of the state, they should assume a culture of partnership, of compassion, of care.
But notes were being taken.
They fear for their child because of an autism diagnosis. How will they navigate the world?
Will they have to endure prejudice, misunderstanding, isolation? Who will partner with us to empower them, they ask themselves.
But notes were being taken.
Parents hear of long waiting lists, 18 / 19 months for an assessment of need. 35, 36, 40 months for some essential interventions. Why do they count these times in months: 36 months is three years! They ask these questions at night heartbroken at the sight of their sleeping three-year-old who will be six by the time their country comes to their aid.
But notes were being taken.
In rooms were the compassion of the state should have been most manifest, notes were being taken to add to a dossier that may be used in a court case.
If you were so exhausted and frustrated by the failures of this country to empower your child that you turned to the legal route, they would turn to their notes.
A dossier not just on you but on your whole family. The revelations from the PrimeTime Investigates Programme earlier this month exposed the culture of confrontation that emanates from the corridors of the permanent government.
Notes were being taken.
Yes the expose was shocking, but somehow ironically completely unsurprising. Because no-one who has ever had to embark on this adventure with their autistic child would in anyway be surprised at the culture, the systemic failures and the institutionalised obstacles we promote as a child centred approach.
No western democracy would attempt to stand over such pathetic waiting lists, no genuine Republic would force parents to go on a hopeless merry-go-round trip of local schools in order to access a place for their child, and no country with aspirations for all their children would force families through the courts when they try to vindicate their rights and then to reach into a filling cabinet or download a file within which is the dossier that was compiled by taking notes.
So today we in Labour Party want the government to take note. We want Dáil Éireann to take note. We want the citizens of this country to take note. Autistic people are a gift. An inspiration. A guiding light for all of us. We are enhanced, we are empowered, we are enlightened by them. Their potential is limitless. All they need is a society willing to listen, willing to learn, willing to love, and willing to empower. Willing to take note of who they are.
There was a man over a hundred years ago who took notes. He took notes for an address that he would never make, during a struggle and a time after which he would be long forgotten. His name was Tom Johnson. The leader of the Labour Party in 1919, he was entrusted with the honour of scripting the Democratic Programme of the First Dáil. And as voices like his struggled to be heard over the sound of gunshots from the men and women of war and of flags he wrote of the children.
In his well-crafted notes he wrote:
The Irish Republic shall always count its wealth and prosperity by the measure of health and happiness of its citizens. It shall, therefore, be the first duty of the Government of the Republic to make provision for the physical, mental and spiritual well-being of the children, to ensure that no child shall endure hunger or cold from lack of food, clothing or shelter, that all shall be provided with ample means and facilities requisite for the education and training of free citizens of a free Gaelic nation. A condition precedent to such education is to encourage by every reasonable means the most capable, sympathetic men and women to devote their talents to the education of the young.
We should reflect on the notes he took. The words he used. Health. Happiness. Physical, mental and spiritual well-being. The need for sympathetic men and women to devote their talents to the education of the young. This is the founding document of our state, of this Oireachtas.
It is said of Tom Johnson that he wept openly when he heard these words read aloud as he had written them in his notes.
Have we failed that aspiration? That purely Republican aspiration for the well-being of the children. Of the sympathy, the understanding, the compassion of that same state. As today these children try to find their voice between the flag-wavers and the tax-cutters – they now need to be empowered.
We need a National Autism Empowerment Strategy to correct the mistakes of this state and to embed here the international best practice of others. The Maltese Autism Act is the template that this country should work from. An act, in its citation, which seeks to, and I quote
“to empower persons within the autism spectrum by providing for their health and well-being in society, the betterment of their living conditions, their participation and inclusion in society and to make ancillary and consequential provisions thereto in full adherence to the UN Convention on the Rights of Persons with Disability.”
Again, those words as if inspired by Tom Johnson – health, wellbeing, inclusion, betterment. It is an act of empowerment, an act of defiance – that in the face of generations of misunderstanding, prejudice and underfunding, autistic people are now ready to defy the odds, defy the history of their state, and defy the expectations of their country to live full, productive, healthy and love-filled lives. We should compare notes with Malta.
At the heart of the Maltese legislative achievement, and at the heart of our motion is accountability. Its what parents are crying out for. Accountability of service providers. Accountability when mistakes are made and when gaps need to be filled. Accountability to this house. To Dáil Éireann.
These are the notes that the minister and the government needs to take. Take note from Malta. Take note from the advocacy groups and parents associations who are crying out for the state to take some of the burden in this empowerment process.
Groups like those in Dublin 6 and Dublin 6 West who are working with Senator Ivana Bacik.
Groups like those in Dublin 12 who I’ve met with Senator Rebecca Moynihan and who are changing the world for their children.
The children I’ve met in my own constituency like James Field and Abagail Cahill who have changed my entire understanding of the world in which they live.
Listen to groups like AsIam who empowered us in the Labour Party to script this motion today.
It is not right that parents feel they are at war with their own government, with their own state. It is exhausting, humiliating and defeating. Phone call after phone call, letter after letter, referral after referral, waiting list after waiting list, school after school. And all the while, notes were being taken.
For the last number of days we have been flooded with stories from all over the country which should shame all of us.
The mother in Limerick who has been told there is no local school place for her child, who travels to Nenagh twice a day – a total of 184km every day – because the transport needs for her child still have not been resolved.
Why should that mother believe that anyone cares? Why should she believe in this republic? As she drives past schools that can’t take her child, in her own car because the transport hasn’t been arranged, to a town in another county 46km away?
Simply because her child is autistic.
Many wonder if it is because of notes that the state is slow to respond. Euro notes. But millions of those euro notes could be saved by empowering our autistic citizens. The money you think you are saving by hoping parents will access private assessments or therapy is pittance in comparison to the money saved by preventing the vulnerability of a young person with autism. Because yes they are more likely to enter homelessness, more likely to experience unemployment and more likely to fall prey to addiction.
If you think empowerment is expensive, try disempowerment.
But there is hope. There is ambition. There is vision. There is empowerment and we ask of government to support our motion today.
An Empowerment Strategy that focuses not just on health and education, but on housing, transport and employment too.
We say to the autistic children, autistic young people and autistic women and men of Ireland: there is a reason why autism sounds like awesome!–
So we say to you:
Strike your own note.
Sing your own song.
Play your own instrument your own way in your own time.
March to the beat of your own drum.
We need you. We celebrate you. You empower us. We will empower each other.
We say to your families – you are not raising your child to be a second class citizen. We will not permit it.
We commend this motion for A National Autism Empowerment Strategy to the House.
It is time to stop taking notes.
It’s time to take action.