Newcastle University

New Hope North East Interview, October 2016..

Ms Sunduzwayo-Mlambo is the founder of New Hope North East (NHNE), an organisation that supports disabled children/young people along with their families. Her son was diagnosed as autistic at the age of 3, and is now 17 years old. The current project NHNE is working on is entitled “Breaking Barriers-Opening Doors” (BBOD), funded by ‘Awards for All’. The primary goal is to increase awareness and thus access to support systems for children and young people with Special Educational Needs (SEN), with a focus on reaching out to Black and Minority Ethnic (BME) parents and carers.

 

Mahul Patel, Daslⁿe volunteer, interviewed Elizabeth Sunduzwayo-Mlambo on Thursday 20^th October about her views regarding the diagnosis of autism, issues NHNE members have encountered from services and future plans.

Would you tell me about any issues you have come across regarding the diagnosis of autism?

When I was told, “Your son has autism,” I had to ask them “What is Autism?”. I was really shocked because they told me my son (age 3) might never be able to speak, or be able to do the things other children of his age can do. So that was really a big impact because I didn’t know what it meant, and I had to read on m own what autism was all about. I was then invited to go on an EarlyBird course by a teacher who was helping my son and I. After that I realised that ever since my son was 1½ -2 years old, there had been signs of autism, which I didn’t look out for because I didn’t know about them. After his diagnosis I got some help. I looked for a special school and chose the school that he is still going to up to this day.

Some of our members of NHNE had some issues as well. Some parents didn’t know much about what autism is either, until after the diagnosis was made. Many feel the diagnosis was made too late. One family didn’t know their 10-year-old daughter had autism. Now that it has been discovered she is getting the help she needs, but for some people, diagnosis alone is not enough. Some families require people who will speak to you personally, and explain and support you through the diagnosis, and refer you to the services that are there to support you.

Are there any issues you have faced or are aware of from health and education services?

Yes, there are some issues. With the 10-year-old girl, who was from outside the UK originally, the family was repeatedly told by her mainstream primary school that she was simply a slow learner. She was kept that way in school for four years until a family member insisted on help. Another 6-year-old girl, also in a mainstream primary school, was also labelled as spoilt with behavioural problems because she would argue with her teachers. Here the family pleaded that she was not spoilt and asked for her to be assessed. The assessment took about 2 years to take place. Another family’s son found the noise of the bell in their mainstream school to be very disturbing, often hindering them for the whole day.

I think it doesn’t matter whether you are from a country where they are ignorant about autism or from UK, the process of assessment and identifying autism is sometimes very daunting, as if the child is in a school where the teachers are not familiar with autistic children, or the mild autistic signs to look for in children, it is difficult for them to identify. Only when a parent keeps pushing for a diagnosis or referral to be made does it happen. But a parent from another country who does not know what to look out for will probably just keep the child as they are, in the same school. More should be done by the education services to help look for signs, and by health services, to make parents aware of the possibilities. If it were emphasised in the PGCE teacher-training curriculum how to spot signs of autism, how some children are affected in mainstream school and how to manage it, children and families would benefit greatly.

For parents from BME communities the challenges in relation to autism are even worse. Some people can judge them; they face racism, and language difficulties. For these reasons they find it difficult to access help from services and professionals. We are campaigning to support marginalised disabled children and young children from diverse communities, to ensure equality of services and inclusion, and that their rights and aspirations are recognised  and met.

 

What are some other perspectives from the BME community and what are your plans for the future?

Collaboration between communities helps, especially because many ethnicities find the subject of autism in the family to be a taboo topic, and many dismiss any unusual behaviour in their child as the work of spirits, witchcraft, or divine punishment of some sort. Together with education on autism, we can eradicate these beliefs and help families function better with their child, allowing them to learn and fulfil their potential. Our project BBOD, aims to improve access to support services for BME families with autistic individuals. Our parents support one another and exchange ideas to help others during our support groups and discuss how they as parents can work around their child’s needs. The group trips we organise open parents’ eyes to just how much of a normal life they can lead. These trips help to eradicate the stigma they have felt about autism, remove them from isolation and give them confidence to mix with mainstream families and the wider community.

 

 

We hope in the future to break the barriers of exclusion and have our children mix with mainstream children. Disability is not a disease, it’s a condition. We are just different, and we need to embrace one another so that we have a positive future that has everyone in it, despite their backgrounds, their ethnicity, their disability. We just want a strong unified community.

NHNE hopes to in the future set up a respite whereby the needs of children from different ethnicities are met, particularly catering for their religious beliefs, food preferences, and play routines. These vital needs would be worked around at the respite, providing each and every child with a safe comforting environment. This multicultural respite would be in the form of an Ofsted approved afterschool club.

Ms Sunduzwayo-Mlambo hopes to campaign in the future to help influence Parliamentary decisions regarding autism and the support affected families will receive.