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I have Asperger’s Syndrome and two of my five wonderful children are also on the autism spectrum.
I am a past student of University College Cork (UCC) and received a certificate in autism studies last October.
I set up the advocacy group, Autistic Rights Together (ART), to give people a voice and to create a platform that would include autistic people in all aspects of their lives, including in education, employment, services, supports and research.
However, with the latest report on the upcoming collaboration between APC Microbiome Institute, at UCC, and British pharmaceutical company, 4D Pharma — a €4.8m, four-year research project — we find ourselves, once again, left out of the conversation, with autistic people being depicted as diseased and of abnormal behaviour.
This is extremely disheartening, considering that the autism-studies course offered by UCC classifies autism as a neuro-developmental condition, not a disease.
The UCC course prides itself on promoting the ideals of neurodiversity, yet APC are using words such as ‘disease’ to describe autism.
This misinformation feeds the negative rhetoric that is the driving force behind a biomedical industry.
Autistic Rights Together have been campaigning fiercely, in Ireland and worldwide, to bring in legislation to regulate all autistic treatments and to ban those that are dangerous and unethical.
It has been an uphill struggle, largely hampered by the fact that autistic people are ignored, despite their invaluable knowledge and intimate understanding of the autistic spectrum.
Legislation is badly needed to clamp down on rogue treatments, but, to date, our calls on government ministers to act on this issue have fallen on deaf ears.
Neither do we have an Autism Bill. Though it was drawn up in 2012, it is still languishing at the committee stage.
What many non-autistic people and professionals do not seem to realise is that what they may view as ‘abnormal’ behaviour may be normal for an autistic individual.
Stimming (repetitive body movements), for example, may often be seen as a ‘symptom’ by many professionals and non-autistics. But stimming is a vital form of self-regulation for an autistic person.
Autistic people have a different sensory experience and express themselves differently to cope. You cannot separate autism from the autistic individual.
It is true that many autistic people experience anxiety, and other issues which are challenging, and these need to be understood for the proper, informed supports to be put in place.
All too often, anti-psychotic drugs will be given when real understanding of the reasons behind so-called ‘abnormal behaviours’ could greatly reduce, or negate, the need for such serious, life-altering medications.
Many people have reached out to me about this report and the upcoming research, upset by the lack of understanding and the misinformation.
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