Autism in the Black and Minority Ethnic (BME) Community – It’s My Experience

Raising awareness about autism and aspergers has been extremely difficult from the start.  When my son Nathaniel was diagnosed with Autism and Attention Deficiency Hyperactivity Disorder (ADHD)  in April 2008, he was 5 years old.

I knew something was different, but just couldn’t explain it as he did not meet all his milestones. Isolation, being accused of neglecting your child to your child being called a “sissy”, because he was floppy and too gentle.  There was no mention or any suspicion that he was autistic.

I wanted help, but majority of people did not believe me, they looked at me!  People could see that something was wrong, he was non-verbal for part of his early years, one reason was because I cut his hair before two and due to him having a dummy (obviously that didn’t make no difference, he started to suck his thumb then his fingers). From afar, people would make their own personal judgement, but ignored the signs (but they wouldn’t know either, they were not specialists), even those in professions that worked with children, still did not spot it. So what hope would any child have, if their behaviour is just linked to bad parenting and a being a whatless mother? I am not a doctor or a specialist. I knew my child better than anyone else, even those who knew him, remained in denial.

It did more damage and delayed the process for him getting the right support from the start.  He is high-functioning autistic and is verbal, he is a typical little boy, but in my eyes just has a little bit of kick with alot of extra energy and the ability to try and out smart you.  You have to be one step ahead or he will try and fool you. What was God’s plan was not man’s plan. My prayers were answered. My son has come a long way!

Despite my son getting the diagnosis, people still continued to shun me for being too over the top about raising awareness about Autism.  They didn’t have to tell, even though some people where bright to tell me. I could tell by just how they acted towards me and the sly comments. You learn to become thick skin and ignore the negative comments. You become like a lioness protecting her cubs, but that doesn’t mean that fathers don’t feel the same way as I have seen some fantastic single fathers raising their child(ren) alone. And I don’t ask where the mothers are.

Raising a child with special needs is hard, but has rewards, especially if you have a tight network for family and friends around you.  Society need to understand also that a couple could be the best parents and give the child all the love, but if autistic, the child will still demonstrate the same problems that a single parent will experience. Only thing is that hopefully two parents can work together in caring and raising the child.

I would get feedback that I was making a profit from my son’s disability.  How I would like to know as I gave up my Broadcasting TV career as I believed that, if I had stayed in full time work, I would have never saw the signs and I would have put it down to him just being a “naughty” or “rude” child as he was constantly told.  As he got older, I found it hard to cope with his behaviour. If a child was crying or I would see him coming raging like a bull to me. I knew that he was misunderstood. As he got older I became depressed with everyday life as people around me expected me to still be some kind of super woman, filming, editing and producing work to a standard. I no longer could commit to my own personal interest and directed it to making sure that my son would not become a statistic, that would come from many parents mouths.

I get no financial gain from staying home, but I get the peace of mind, knowing that I can make a difference for my son and many other children and young people in his situation.  I have experienced different levels of ignorance and arrogance from those who claimed to understand, but many had their own agenda and motives.  When you put your career on hold or decide to make a drastic change to your lifestyle, many people seem to think they have the right to dictate to you about what is best for your child. What do they know?

If your lifestyle has remained the same, after a diagnosis, then I may need some tips on how you succeeded as I have not met one parent/carer as yet who has this secret remedy. Unless they are a millionaire or the perfect couple who just get everything right and don’t need no help.

The majority of society don’t really understand, many people are so quick to judge and so quick to send me “recovery” or “cure” articles, know they are trying to help? But autism is not an illness or a disease, so how can you cure something that is not either. My son did not become autistic, due to the MMR, but still there is always someone coming with some other reason for him having autism. If you took away autism, he would not be Nathaniel. I love him the way, he is. Just wished that he was diagnosed much earlier as the traits were evident, not to have to battle with four tribunals in seeking the right educational support, more support for the condition at home as his siblings struggle to cope with his sudden outbursts.  People will not understand, unless they live it. I don’t judge anyone, when it comes to their child or adult as there could be an underline problem. That is being ignored and it is not fair on the individual, if they can get the help.

Triad of Impairments - Diagram: National Autistic Society
Triad of Impairments – National Autistic Society

Autism is a complex neurological condition and a lifelong developmental hidden disability. There are 1:100 people diagnosed in the UK, affecting 1:4 boys, girls don’t seem to get as much mention. But I believe that this is extremely important and needs to be addressed. Autistic children do become autistic adults and many do become autistic parents. The question that we need to prioritise and think ahead, what plans do you have for your child or young person, when they leave full-time education. Check out The National Autistic Society Site which is UK based: Contact: https://www.autism.org.uk/

Is it true to say that those with high-functioning autism and aspergers syndrome don’t get as much support. Due to society not seeing them as needing any additional support?

There are many professionals who will tick the boxes and go by the book, not realising that each autistic individual whether a baby, child, young person, adult or even the elderly all need individualised support and guidance, based on their individualised needs. All autistics are unique.

What works for my son, may not work for another child, my son has a sensory diet and an individualised timetable tailored around his needs.  Having a great partnership with your child’s school and home is much easier for all parties involved.  All autistics have something in common. The triad of impairments affects the individuals social language, social communication and social interaction. Once you understand this, you may understand the individuals personalised needs.

Many people have made comments such as “ I use his autism as an excuse for his bad behaviour and he needs more discipline”. Really! Then speak to many parents, whose children/young people have been excluded for unruly and bad behaviour from primary leading into secondary schools, then only afew maybe diagnosed with ADHD, ADD or other related conditions or illneses.  Sad to say, but autism can go amiss as you need an autistic specialists to assess your child/young person. Instead you may be offered additional support – being referred to CAMHS – Children & Adolescence Mental Health Services or a parenting workshops that you would have to attend. My son don’t like being asked questions and his behaviour problems, is due to sensory overload and being misunderstood. Nathaniel makes it clear! “Not going to that place”. Don’t get me wrong, I do understand why these departments are in place, but just don’t work for my son. He hates being asked questions and hates sitting in one place too long. Unless it is something he likes!

If you are not happy with your child’s diagnosis, then get a second opinion, but don’t write it off. You may regret not getting that additional support that was detected by a professional who wanted to help.  Lets not forget that there are bad parents who just don’t give a damn or just don’t want to admit that their child is the perfect child.  There are some real unruly and disruptive children and youths out there, but too many autistic children get lost in the system, because of the lack of understanding, myths and it being a hidden disability.

No one wants to air their dirty linen in public? But it is OK, to put everything else on Facebook, twitter and other social sites. Facing the facts, instead of ignoring is not fair on your child.  Your child if verbal, will do that for you.. Tell everyone your business, because what they see they will tell. They have no loyalty. They speak what they see! Their honesty and directness will expose many things about who has upset them to who is not telling the truth.  So be mindful and open-minded about when your child’s behaviour is questioned by a professional or a concerned parent/carer. If you know you haven’t done anything wrong and you notice your child is just damn right rude. Seek professional help and not listen to the old wives tales… “The pickney just bad, he needs a lash”. Just remember there maybe an underlining problem.

If Nathaniel was my first child, I don’t really think I would have had another child,  he was a quiet and pleasant baby, but once he started to walk, my nightmare began, he don’t sleep, a picky eater and always on the go (and still the same to date).  He is the middle child, so his siblings get the brunt of his outbursts and blaming him at times for not allowing us to go anywhere.  Siblings need just as much additional support as they lose out on many of the everyday activities as the autistic child can be very demanding and controlling. Some parents/carer may have a quiet child, but still we have to be vigilante and supportive at all times.

 

Nathaniel –  2 mths old

I still feel that the majority of people that I come in contact with, still in question about Nathaniel being autistic. The favourite comments I constantly hear “he’s fine he listens to me, he isn’t autistic, he is just misunderstood, he is so intelligent? He looks normal to me? What is wrong with him? Or I am just labelling him! If I was able rewind and write down everything that I have experienced from the time he was born to date, it would become a novel.  You have to live it to understand it, some families cope well, whilst others had to experience third parties stepping in and removing their children or many putting into care by default.   We need more respite services, sibling groups, girls and young women groups, father groups with regular  workshops, as many mainstream schools do not give that additional curriculum or support once your child is diagnosed.

We always hear that there is not enough funding, but make sense out of nonsense, if the child get diagnosed from nursery school or primary, why does it take many families years to get the right support. That is if they are happy with the school their child is in. But at the end of the day, what support is given outside of school, such as social skills groups, leisure and activities as not every play area will cater for Autistic Children and young people as many parents too scared to take them out, if they have not been given the tools and strategies in helping their child or young person.

Question: If a child has a visible disability, would that be labelling the child when you can see that the child or adult needs additional support?

Over the last 5 years I have met, spoke and connected with many individuals and families across the UK, but social networking sites have linked me to some great individuals and organisations that have given me a wealth of information and moral support when I was seeking for assistance in getting answers to my son’s erratic behaviour.

The diagnosis helped me to understand him. I don’t use Autism as an excuse for his behaviour, but know what triggers his behaviour and how to try and prevent it from  happening. This can be difficult at times as you have minimal control when you are out in public. People just see my son as rude and that I don’t know how to control him. His little sister will be quick to explain, if he is having a meltdown. But then she triggers him most of the time as she likes to wind him up.

I have learnt to be more thick skin. What matters is that my son is safe, happy and able to do things that boys like to do.

In Mid early January 2013, I was determined that this year was going to be the year that I came out of my comfort zone and make a difference.

Me in the my officeJackie Pilgrim caught my attention with a post she shared seeking to connect with those from the BME communities. on the 13th July 2013, we connected on Facebook. The rest is history.

Check my interview with Jackie Pilgrim – An autistic mother raising her autistic son.

 

 

For more information about A2ndvoice

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Website: http://a2ndvoice.com

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Linkedin: https://www.linkedin.com/in/venessabobb/

 

©2013 Venessa Bobb

 

Published by Venessa Bobb

Mother of 3, raising awareness about Autism and Abuse. Two of my youngest teenagers (14 and 17) both have autism and ADHD. The youngest has Benign Rolandic Epilepsy and my oldest daughter (19) has Moderate Language Difficulties and has a 2 year old son. Currently Branch Officer for Lambeth Branch for the National Autistic Society, Member of the Advisory Group for the All Party Parliamentary Group on Autism, Member of the NHS England and NHS Improvement Parent Participation Forum, volunteer for Cassandra Centre and Groomsafe

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