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Autism
Be the change in 2021 Fighting the stigma of autism is already an uphill battle, but it can be extra hard when you’re part of a minority group, writes Venessa Bob
T
he first lockdown made me realise how much autism and other related conditions are overlooked. I caught pneumonia at the end of March. I thought I had asthma, but the inhaler didn’t work, and it took me a week before I got to the GP. I was scared to think what would happen to my children if I died. I had battled for years to get the right support for them. For any parent of an autistic child or adult, asking for help, advice and information can be exhausting, tiring and degrading. For many, parents of autistic children, mainstream provision is non-existent. Autistic household lifestyles may raise eyebrows to the non-autistic onlooker, who may be quick to criticise without understanding what autism is. Include the cultural perspective and another layer is added.
Covid-19 During the first lockdown going shopping was a nightmare. Finding particular brand foods and drinks was impossible (my teenagers have highly specific tastes, so forget about non-brand food!). The one size fits all policy installed during the lockdown caused unnecessary distress. The lockdown benefited many, yet there appeared to be little or no consideration for those who have carers, the elderly, expectant mothers or lone parents who have multiple dependents with disabilities. Just look at the one-person household rule when going to supermarkets, and the reports of security personnel mistreating customers with a hidden disability! As a Black mother raising three teenagers between the ages of 15 and 20 and a 3-year-old grandson, Covid-19 certainly put my parenting skills to the test. Having to ask for help was something I hated doing, but I needed to as I could see the issues unfolding within my household. I was not prepared for lockdown; I was planning two SEN tribunal appeals which ended up being remote.
“For any parent of an autistic child or adult, asking for help, advice and information can be exhausting, tiring and degrading.”
My son was diagnosed at 5 (in 2008) with Autism, ADHD and Sleep Disorder and then in 2018/2019 with Learning Difficulties and Severe Receptive Expressive Language disorder. My youngest daughter, now 15, was diagnosed in 2017/2018 with Autism, ADHD, Severe Receptive Expressive Language disorder and Epilepsy. In 2017, my eldest daughter was diagnosed with Moderate Language Difficulties. She is the mother to my 3-year-old grandchild. I was already running a non-profit that I formed due to the challenges I experienced with my son. As a result of the Covid-19 pandemic, I was invited to join several steering and consultation groups. This gave me an insight to the lack of services and provisions for autistic people and their families. Isolation, social distancing, support bubbles and face masks had become the new normal. For many there was no school, no college, no homework, no work and no socialising! Our area is now under Tier 5 restrictions, which has caused more divide, more confusion, mixed messages and uncertainty for autistic individuals.
What needs to change Local clinical commissioning groups, volunteer groups and many statutory groups need to be re-trained in Autism. There is a need for major changes to how data is collected and checks put in place for how information is shared.
■ Venessa, Joshua Beckford and Knox Daniels.
SEN111
During lockdown, our non-profit has seen an increase of Black families urgently seeking help. I remember in 2008 when my son was diagnosed, the only information I was given was two national charities that were of great support. The only problem when attending their local support group was that I was the only Black parent. This meant that at times, I found the coffee mornings were not of interest; they lacked the cultural element. senmagazine.co.uk
