During today’s debate at Stormont regarding the rise of private autism diagnosis, Pam Cameron MLA stated that she was deeply concerned at the current levels of need facing the autism community and that she will be proposing to introduce an autism Private Member’s Bill to strengthen the current Autism Act. An amendment to the motion tabled by Mrs Cameron and DUP colleagues was supported unanimously by the Assembly.
Mrs Cameron stated during the debate, "As Chair of the All Party Group on Autism and from many consultations with families and autistic individuals over the years, I understand how important it is to access timely interventions and tailored supports. However, the only way to access these interventions and supports is through gaining a diagnosis. Therefore, many families and individuals feel as if they have no choice but to seek a private diagnosis and pay for it themselves, costing up to £1400 as the waiting lists exceed two years in some parts of the province. With a private diagnosis, families and individuals are able to access supports straight away, whereas those on NHS waiting lists are waiting years for those same supports. This is inevitably causing serious inequalities within the Northern Ireland health system that cannot be ignored any longer. No family should be at a disadvantage due to their economic status.
From what I have been hearing from constituents and grassroots advocacy organisations, I know that things have gotten worse not better for our autism community over the years. Since the Autism Act was introduced 10 years ago, it is clear to see that the Autism Strategy from 2013-2020 and resulting action plans have failed. Only one out of the three action plans were completed within the allocated time period.
For this reason, I have sponsored, with the full support of the All Party Group on Autism, a Private Member’s Bill. The aim of the Bill is to strengthen the current Autism Act (NI) by introducing an independent scrutiny mechanism to drive forward the regional implementation of key services through this existing autism legislation. The Bill will address the lack of accountability, independent scrutiny and transparency which has curtailed the potential of key elements within the current autism legislation. These issues were highlighted within the Bill's public consultation process that attracted in excess of 1800 responses back in October 2020. Indeed, this public consultation received more responses than any other Private Members legislative consultation in Northern Ireland history. This shows the level of concern from both our autism community and professionals at the need for legislative action to deliver a system that works for autistic individuals and families.
The current situation is nowhere near good enough and the autism community deserves so much better. Autistic children and adults are a vibrant part of our community. They are our friends, neighbours, colleagues and family and they deserve to have the same rights, support services and opportunities as every other person in Northern Ireland. They certainly should not be at a disadvantage because they are autistic. However, the current system is letting them down and it is up to us as legislators to change this. We cannot keep turning a blind eye to these very real issues. It is not fair, it is not right, and it is our responsibility to provide a more inclusive society for everyone."