Essex, UK – Jo Jones is a mum who to 5 children ranging from 18 to 7, her second youngest child, Dan aged 10 has Asperger’s Syndrome. In November 2013 Jo started her campaign, ‘Voice 4 Aspergers’ in which she is striving to make mainstream education accessible to all children with ASD. The reasons for starting the campaign and an online petition stem from years of receiving no help and of being unable to accept support for Dan.
This is part 2 of our interview with Jo. Part 1 can be found here.
However Jo told us that the failings did not stop there. Dan was referred to CAMHS (Child and Adolescent Mental Health Service) last July but was given no support.
“I was told by CAMHS that Dan would only receive help if he had additional problems on top off his already exhibiting problems of eating disorders, self-harm and sleeping problems and anxiety issues. At the time Dan was self-harming, the educational psychologist had even put this in their report yet they refused to give any help as they said that his self-harming was linked to his Aspergers.”
Jo was also failed by the occupational and physiotherapists caring for Dan.
“Dan has hypermobility and poor core balance but the Occupational Therapist and Physiotherapist signed him off.”
Jo also sought help for herself from social services during a really difficult year when Dan clashed with his teacher at school and was self-harming and was being physically and verbally aggressive to his her and his younger siblings. Jo described to us a very distressing incident in which she found Dan with his arms around his 3 year old brother’s neck and that she got there just in time in time to help him, at the time the brothers were sharing a bedroom. Even though Jo retold this incident and the fact that her child was struggling and exhibiting challenging behaviour daily again she was refused any help.
“I was told that unless my child was in a wheelchair or had a learning disability they could not help me”.
Therefore because of all these experiences Jo decided to set up the campaign and petition, the petition was set up in January this year.
Jo told us that after reading about other parents experiences from all over the world, about how they cannot get help for their child with Aspergers or for themselves, she realised that she was not alone.
“They cannot get any help at school or a statement if they have a child with Aspergers as they are seen as not having special educational needs.”
Jo continued to explain how she is worried for other parents out there:
“I worry for those parents out there who are not knowledgeable about autism and who are receiving no help from school.”
Jo told us that she is fighting for all children with ASD, not just her own son to be able to have the specialist education and help and support that they need while accessing mainstream education.
Jo also added that the government would save money and resources in the long run if they help these children now as it is proven that individuals who have Aspergers are more at risk of developing mental health issues, anxiety disorders and depression as adults.
Jo is striving for change for children with Asperers Syndrome, her final words were:
“Autism/Aspergers is on the rise. These children need support now. Investing in them now will outweigh the short term cost later. Please come and join me in my campaign for change”