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

The 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 benefitted 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, COVID19 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.

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 COVID19 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.

‘As a Black mother raising three teenagers between the ages of 15 and 20 and a 3-year-old grandson, COVID19 certainly put my parenting skills to the test.’

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.

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; it lacked the cultural element.

Talking about race

After the Black Lives Matter movement last summer, I have noticed that discussing the movement brought discomfort. There is clinical evidence that Minority Ethnic groups are at a higher risk of dying from COVID-19 than the rest of the population. When autism and learning disabilities are also an issue, it becomes an area that the government and local authorities are still not sufficiently addressing. Many Black and Asian autistic people are also suffering due to the lack of representation; many are not known to the local authorities and have difficulties accessing local services. 

It was depressing watching the news, as it constantly kept repeating the same thing on all channels. I wanted to do something, and decided to start running programs in Wandsworth and Lambeth. 

My first online session was held in April, hosting from 2 to 4 online sessions a week. Our face to face coffee mornings and workshops consisted of the regular group, mainly White families. However, I noticed an increase in Black, Asian and Dual Heritage families who joined the online events regularly. Many of these attendees didn’t know about local groups! Autistic people and families formed new friends. Our  goal was to provide a safe space and bring communities together.

How autism affects non-white communities

Autism affects all communities. However, the additional challenges for Black and Brown people are the lack of understanding, acceptance and support within and outside of the autistic community. Cultural awareness programs are essential to minimise a lot of the issues within the family home and wider community.

With my non-profit, we co-delivered and co-produced online programmes with SEN Parenting funded by NHS England to look at Inappropriate Inpatient Admission in Prevention and Avoidance in a Crisis for the African, Caribbean, Asian And Minority Ethnic Community. The program had a range of speakers from different cultures, professions, autistic speakers, parents, carers and researchers. Providing these webinars allowed different communities to come together and have healthy discussions and not be scared to talk about race and the challenges found within their families, friends and workplaces.

Finding representation

The difficulties for African, Caribbean, Asian, Minority Ethnic and Dual Heritage families is a lack of representation when seeking for materials and resources that look like them. Africa has around 2000 languages, whilst Asia has 2300. So it is important to know where to find local ASD or SEND groups who may have a translator, interpreter or someone who can assist. Confidentiality is the key so it is important to make sure that those who are offering the services are specialists. However, there are many other areas where work still needs to be done. Several issues raised due to lockdown include the availability of services to cater for sexual health, dental health, eating disorders, sleep deprivation, annual routine checks, benefits and the other issues isolation, loneliness, suicidal thoughts and attempts to  find support for ASD specialist counsellors for loss or bereavements. No reasonable adjustments, no easy reading materials and no proper information on COVID19 to support those who struggle with social anxiety, living alone and older parents. In these current times we urgently need pop up clinics for autistic people and those who need support. Overall, the best advice I can give when looking at ethnicity and culture within the SEND community is; don’t assume, ask questions and listen. 

African, Caribbean and Asian people may have some similarities, but bunching us all together has caused problems which COVID19 has exposed. Racism, prejudice and stereotypes cloud people’s vision. That is why I no longer use the acronym “BAME”, as as Black, Asian and Minority Ethnic communities are still being excluded. 2021 is the year to enlighten, to empower and to make changes. And it starts with us.

For more articles on parenting autistic children, click here and here. For the A2ndVoice website, click here.