We should be able to discuss topics no matter how sensitive the situation is. Just by watching the news! COVID-19 was the talk, now Race, Racism and severe difference of opinions is destroying and challenging friendships and relationships. Don’t take the bait….
Lockdown clearly has been a real challenge for many people, especially when they have to be FORCED to stay at home. Yet the voices of the autistic community and their families has been ignored.
Social distancing, self isolation and quarantine has brought out the ugliness in many but I am not surprised. Being home with my trio and my grandson (oh, need to update on the lack of support for young mums with additional needs)
It took for the death of George to wake up the World, to get people to check themselves, their families, their friends to even work colleagues.. Everyone has been tested and true characters have come to the forefront.
Black Lives Matters Movement #BLM has become a trend for many to join with no purpose in making real changes, but to seem as if they are doing something. It has become a fashion now to see those who would NEVER talk about their ethnicity or support any event that had BAME, BME or Black and Asian linked to it, because they did not see it as of importance.
For years had many families would complain about not there being not enough of? Numerous ASC/ADHD/SEND support groups seem to think that keeping silent on race will go away. Race, autism and many other hidden conditions need to be addressed for numerous reasons. Just need to look at the negative responses and comments to requests in hosting or providing services for BAME groups.
So if by default you are one of those individuals and organisations who feel that having one Black person, one Asian person or one Person of Colour (do hate that term to be honest) is making a point of inclusion (your wrong). Do you really care about inclusion or is it you may feel uncomfortable as you are expected to join the majority so not to feel left out. I personally would not be able to host events without the representation from lived experiences and specialists as I cannot and I will not speak for people, but only give my experiences.
I was told I had a chip on my shoulder and was aggressive for seeking for support and advice. Why can’t we ask for assistance? Why should we keep silent to make others feel they have provided support? When they have not. I do not do lip-service. I am a community connector by default providing a service in supporting families who have experienced the same struggles.
Abuse is a dangerous thing when gaslighting, physical, emotional and sexual abuse is within the family home. Professionals can get it wrong and so can family and friends. How do this ASC groups support the family, if they just focus on Autism? I had to make sure I was able to connect with families who were being silenced in groups, isolation is a killer when amongst people you think are with you, but inside you are hurting as you can’t be honest enough to speak out and say I need help.
My journey, my experiences talking about autism will be very different from the majority of Black people and Black professionals, yet I was made to feel as if I was disrespecting my community.
My life changed for the better when Founder Nia Imara – National Association Black Supplementary School (NABSS) sponsored and supported the first BME in the Autistic Community in 2012, only 3 people turned up this was in Hackney.
Thank you Nia for your continuous support it is appreciated – NABSS http://www.nabss.org.uk/
Filmed by Founder Nia Imara – 2013
Whether many agree or disagree with me. I had to be that parent sitting at events like a needle in a haystack, I was able to identify and see why my son was being mistreated and misunderstood. Black people was non existence or is it that they did not hear about such events?
In 2020 I am still hearing the same things, lack of support, advice and information and lack of representation. In 2013 NABSS held another event took place in Birbeck, Russell Square and others took place at Birbeck, Stratford. I am grateful to all those who helped me on my journey as BAME was a topic that was swept under the carpet and told it was not important. Rather insulting to be honest! Lockdown and COVID-19 opened the Pandora Box and cannot be closed. Data and statistics for Autism in the BAME people is zero….
Dr. Laura Cockburn and Ken Greaves now Dr. Ken Greaves both Specialists Educational Psychologist in Autism both attended the Autism in the BAME Community in 2014. Connecting with autistic people and specialists in Autism has been the greatest achievement in breaking the taboos, myths and stigma. They both have supported me on a journey that has been frustrating as it seems that many ASC groups and BAME autism groups are not aware of national consultations targeting the BAME community. Maybe we will see some changes.
National Autism Society campaigned from 2005 to 2014.
How many BAME families came forward and how many local groups and BAME groups shared and participated in bridging the gap? National Autistic Society – BAME and Autism
Download the PDF. 2005 2007 2014
It takes years to build trust, build relationships and to build strong networks, but sadly not everyone has the same vision to see that things can change for the good. Dr. Prithvi Perepa Lecturer, University of Birmingham co-researched on in 2005 NAS looking at the BME community – Invisible Families. We have come a long way and I am so grateful to see the hardwork that many of us have achieved.
National Autistic Society (NAS) have been a great support for me in many ways that many would not understand. I attended numerous workshops and conferences (whether free or paid) to the point of joining the NAS Peer to Peer Helpine which I was unable to pursue after the free training. I may elaborate in due course on volunteering for NAS.
NAS announced Monday 22nd June, they will be looking at doing more for the Black Autistic community, this also includes the BAME community. Sadly, majority people maybe unhappy with the new announcements, not realising local branches are formed by parents, carers, professionals and autistic people (each Branch run services of interests of their needs and will try and support others families and autistic people).
If you do not have a local NAS branch or local Autism Group in your area. Maybe you could form a Branch, but it can be difficult, if you are unable to find people to join the team. Over the years I have noticed the expectations of parents and carers, to local authorities and professionals requesting or telling us we do not meet the needs of the autistic community.
NAS Branches are run voluntarily, I am a Branch Officer and Chair for the Lambeth Branch and working with Lambeth Borough and other local groups easy to connect with, if they have the same interests. Signposting, sharing of information and networking helps in bridging the gap. But mind you, it is not a smooth ride and have to keep reminding others, we are volunteering in our spare time.
We are a very diverse group, but to set up will need to be able to be committed, to find autistic people, parents and professionals that see the vision of the autistic people and families. Not every group is able to support Black and Asian People with a disability and/or autism if they have no experience in cultural diversity and cultural values. Unconscious biased views can overlook the many Black youths in mainstream schools who may miss diagnosed or misdiagnosed due to discrimination and racism. Professionals need to be educated when looking at assessing Black people. Cultural differences and language barriers can delay the process for a proper diagnosis. Your perception of someone can cloud your vision and destroy an individuals life and the family lives.
It is more than just reading a book. If you have never worked with a BAME family or do not wish to work with BAME families that is fine.. But as with most things, if the service is not available it will cause isolation, alienation and cause a financial strain on the system. That will be another blog!
Society need to be educated on the term “Black, Asian and Minority Ethnicity” acronym BAME. The underline, subliminal messages and digs. Shows the lack of understanding and lack of information within the educational system, social services, criminal justice systems, etc, etc, etc,,,, even many self help groups, voluntary groups and charities have missed explaining what it CLEARLY means and will avoid.
Check this The Times Newspaper with India Knight – Why we do need to scrap BAME?
Feeling uncomfortable? Why, if it has not affected you. Many BAME families and Dual Heritage families have been ignored in many areas. (If one has never experienced racism, discrimination or denied the help… You would never understand. Maybe you are one of those persons who sees everyone should be treated equally. Sad to say… That is not the case.
We continue to see many one side conversation with one size fits all attitudes. Where is the justice, where is the fairness? Too many people complain without doing their research, but quick to make noise when they seem to think that Black people, Asian people or those who do not look like them are preventing them from having a service to meet their families needs.
Each Borough, each Home County to our local areas have different pockets of money to spend. If you don’t check out your local Healthwatch, local Clinical Commissioning Groups (CCG), Social Prescribing and SEND local offer. Have you complained about the lack of services in your local community? I suggest raising your concerns about the lack of provision for autism and SEND.
I am told..
- I am told “we all have the same problems” – Partly true, but services are missing out the on the cultural needs and wants of the Black and Asian Families.
- I am told “I have it easy and I don’t understand” – Obviously don’t know me
- I am told “you are dividing the community” – The community are divided already by class and race? Too many BAME families with Autistic and SEND children and adults are being discriminated and the evidence is there.
- I am told “why you have to bring in race to everything” Maybe attend a Black and/or Asian event “ALONE” and see how it feels.
- I am told “why do black people complain all the time”? People see your skin colour first then the behaviour and then one has to deal with cultural needs and wants.
- I am told “why do Asian people don’t get autism?” We need to educate more on the different communities.
- I am told “BAME is only for Black and Asian people” Incorrect, groups need to be more transparent and share what their services are offering. Are they really BAME or is it the groups is led by someone from the BAME community?
Fantastic to see so many wonderful parents, autistic people and professionals coming together.
- I had one parent tell me I go on too much about autism – Talk to the hand
- Neurotypical parent told me I am milking the system – They don’t know my story, I volunteer and am seeing changes.. What you doing to make a difference?
- I had this one fiesty person tell me that using the race card will get me know where. I don’t need to use the race card, people see my colour of my skin first then make their own judgement.. Please come and help then, what will you bring to the table?
I NEVER EVEN MENTIONED my race.. They got annoyed that I put out seeking for support for the BAME community. Seems that 6 years on, lockdown has proved what I have been saying.
To every ASC /SEND group across the UK….. We all have the same challenges when it comes to raising an autistic child and/or adult.. If a Black, Asian or a Person of Colour attended your event. Would you be able to support their needs, wants and know where to go for help? It is sad when assumptions are made, micro-aggression we constantly have to experience, prejudice and racism does exist. BAME – still excludes and not really inclusive.
FACT: COVID-19 has exposed many things, what many would prefer to keep silent. Needs to be challenged.
Many dual heritage families with autistic children/adults need to be included and don’t assume all is ok. Sad when information, advice and support does not meet the needs of all the families.
Yes, there are many white families being failed by the system as the system need to be educated on Autism and the negative impact of denying that child and adult support….. But in your coffee morning, how would you support BAME families? Do you have the relevant support?
Hosting any SEND coffee morning or groups there are many factors to take into account, if you claim to be inclusive but if one shows the attitudes of cultural blindness and cultural biased views one will offend. Cultural awareness programs need to be facilitated by those who live it. I would never host an event just for the sake of it, but to bring in the voices who can answer the questions relating to their needs.
What are you putting in place to support families who may have an additional language, do you struggle to understand? There are many cultural factors within our communities that is overlooked.
BAME and COVID-19 has highlighted the failures (which includes vulnerable people, disabled people and elderly people) but when it comes to BAME Learning Disabilities and/or Autism and Both and COVID-19, BAME families need assistance.
UK government accused of having ‘no plan’ to tackle higher COVID-19 death rate among BAME people
Who is speaking on these issues?
Over the years I have assisted and supported many White families, Polish, Tamil, French and Spanish, but it’s important to know of other ASC /SEND groups who are able to support the families if English is their second language, information can get lost in translation. Be prepared to make those reasonable adjustments.
We have to learn to understand families dynamics or assuming it is the same as your family. Learning to signpost, share information and to network with all communities in breaking the taboos, myths and stigmas.
I am still on my journey and it is and still not easy…
The London Mayoral Disability Hustings – 2016 – I was picked to raise my concerns about BAME in the autistic community. The outcome – I stopped waiting. We need BAME MP’s and Councillors to be more involved in the autistic and SEND communities. As Black people, Asian People and the Minority People do get Autism too and need to be able to engage with their local MP, if they have an issue. Which sadly, we do not see.
Autistic people need to be included in decision making, just as much as BAME autistic people too.
This is my story, my experience. Things are changing slowly, but we do need to see more participation from the BAME community and for BAME influential leaders and BAME community leaders to be seen.
As too many BAME families in the autistic community have been unheard.
We need to call it out for what it is? If you have been discriminated and experienced racism or denied a service. Make that complaint, I did but you will need to be able to stand strong and not to give up.. Rome was not built in a day.
Are you aware of the All Party Parliamentary Group on Autism
To also find out about the All Party Parliamentary Group on Autism (APPGA) is a cross-party group of MPs and Members of the House of Lords who work together to push autism up the agenda in Parliament. The National Autistic Society performs the role of secretary to the group.
I am currently a member of the All Party Parliamentary Group Advisory Group. The APPGA Advisory Group provides advice to the Officers of the APPGA on autism and current policy issues affecting autistic people and their families.
You can join the Distribution List and be invited to APPGA meetings by emailing appga@nas.org.uk.
Copyright © Venessa Bobb 2020
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