Many parents/carers have contacted us over the past few months asking what the Autism Network N.I. position is on the Autism Act (Northern Ireland) 2011.
We have been informed that an autism charity who lobbied for the Bill; now Act; have been showing a PowerPoint presentation which states that the Aspergers Network now the Autism Network NI; was the only charity against the Autism Act. This is untrue.
We have never been embarrassed or ashamed to speak out and say we disagreed with the Autism Bill now the Autism Act.
Then neither were the Human rights commission ,
The Equality commission,
The Parents Carers Council on Disability,
Disability Action nor PEAT, who were allowed a voice at the Health Committee; and told the committee that “there is nothing in this Bill for us”.
Unfortunately we were never allowed to express our views to our MLA’s due to the sheer number of charities and organisations who were against the Bill now Act which totalled 21.
Why was the Autism Network against the Autism Bill now Act?
Before we explain why we disagreed with the Act we think it is important to show you what The Autism Act says, please see section 1, 2, 3. And 4 below
Section 1 extends the list of “normal day-to-day activities” in Schedule 1 to the Disability Discrimination Act 1995. Capacity to undertake these activities is used to assess whether someone’s condition falls within the definition of “disability” in the Act. The effect of section 1 is to clarify that a condition which has a substantial and long-term adverse effect on someone’s ability to “take part in normal social interaction” or in “forming social relationships” can constitute a “disability”.
We feared that by changing the Disability Discrimination Act (DDA) and making it more specific that some with Autism may no longer fit within the DDA. (This is also why the Equality commission were also against the Autism Bill).
This can be seen in their written submissions to the Health Committee.
We also have fears as to how we now prove that anyone with Autism cannot take part in normal social interaction; or in proving they cannot form social relationships.
What about those with ASD who are married or those who have girl friends/boy friends.
What about those who attend youth clubs, scouts, attend mainstream schools or play in a football team, play sport or have a job will they still be seen as having a disability?
We did not believe that there was anything in the Bill that would help anyone with Autism or their parents/carers. We wanted the hundreds of thousands of pounds that were being spent on the years of lobbying for a Bill; and the hundreds of thousands of pounds spent on amending the DDA for the Act; spent on much needed services. Virtually everyone with Autism has a secondary condition; ie ADD, OCD ADHD, Epilepsy etc: which this act will be unable to address.
Section 2 requires the Department of Health, Social Services and Public Safety (“the Department”) to prepare and publish a strategy on autism within 2 years of the passing of the Act and following consultation with the other Northern Ireland departments. All departments in the Executive are placed under an obligation to implement any part of the strategy for which they are responsible.
We already had an Autism strategy in N.I. which parents/ carers and those with Autism were sitting on the "Regional ASD Network" discussing the needs and future service provision for all with Autism in line; with Patient and Public Involvement legislation. (PPI)
We felt that those who care for a person with Autism and those with Autism should have the right to plan future services, not the CEO of a charity.
We have fought for years to be included within the Disability world and the Bill now Act, has created a hierarchy of disability.
We fear that other ‘s with a disability will turn against our loved one’s because they see them and us as carers, getting and being entitled to more services than other disabled children/young people and adults.
Section 3 explains the Content of the Autism Strategy
The autism strategy must set out how the needs of people with an autistic spectrum condition are to be addressed throughout their lives. It must also address the needs of carers of those with an autistic spectrum condition and identify what steps the Department proposes to take to promote an autism awareness campaign.
Regulations may be made under this Act only if they have been approved by the Assembly. Before regulations can be made, they must have been the subject of consultation.
Section 4 is Interpretation
4. This section defines a number of terms used throughout the Act. “Autism” is interpreted as including Aspergers syndrome, Rhett’s syndrome, Heller’s syndrome and other pervasive developmental disorders not otherwise specified.
All of which were already contained within the explanatory notes of Autism in the Disability Discrimination Act and in the office of the First Minister and Deputy First Ministers Office as the interpretation of Autism.
For Information on the Autism Act go to