Sense of not being heard!

I believe I lost my parental rights, when I asked for help in 2007.

Told I am disorganised and need to check myself! That’s funny! They obviously don’t know me!

I was not believed and accused of many things, I was seen as a liar, exaggerating my sons’ behaviours, accused of being mentally ill and having suicidal thoughts. My childhood abuse and childhood traumas was used to justify my son’s behaviours, which caused delays in him getting the right support. Was it prejudice, discrimination and/or racism? Very difficult to say when many of the professionals that made the choices were Black also. For many White professionals they seem to be more sympathetic and did help! You have to wonder, how many autistic people have been failed for being overlooked, especially Black autistic people? Many parents need help? But we need to be aware of the many professionals who have tried to offer support to these families who denied the diagnosis. Being in lockdown can see how much my children have been failed and me too.

My daughters’ needs were NEVER met as they struggled throughout their early years and primary school. Secondary School was when I lost my daughters and the pain, the hurt, the betrayal and the dishonesty of how people can try to use their position and power to bring you down.

I had the opportunity to write a chapter in Girls and Autism. My contribution you will find me in chapter 6 – Black Girls and Autism.

Things have changed drastically in my household and know it’s time to my own book on my journey. Will help someone who has lived silently for years. Gaslighting is a crime and those who carry out such injustice to families should be exposed. Thank God for the people around me who gave me the voices to speak and to write when I can.

My children were failed and to have to see my daughters’s struggle in the system to be damaged by the decisions made, because many did not believe my son was autistic and that his sisters behaviours was due to me neglecting them and focusing too much on their brother.

I battled and I battled, yet no one really took me seriously. Many judged me by what they heard but could not be bothered to just ask to see the evidence and see I was not lying. I was not a bad parent, I was miss understood and denied the help.

2020, I can say that it has taken the lockdown to see how much all my children were failed and so was I.

When I say I am lonely, it comes with not being believed.

When I say I wanted to help. I could not even rely on several voluntary groups as they forget I am a parent too and don’t realise I do know alot of people and some people talk. If they care enough to tell you.

An article in The Voice bringing awareness of autism to the BAME community and the Church.
Click on image – read article fantastic piece by The Voice Written by Kirsty Osei-Bempong

When I say my daughters needed help, I was constantly judged. When services are denied, this don’t help. The lack of support, advice, information, services is what one constantly experience. And still then if they did offer a service. It don’t meet the needs of your family. Seems failure is needed to create and to sustain jobs for people to try and delay and make excuses. That you must need help! When really they are saying! We can’t help you! You do not meet the criteria. Oh well!!!

Denied help can cause many mishaps and it has taken me from 2007 to 2020 to know that autism, abuse and race is important when supporting families within the Black and Asian communities. The Black, Asian and Minority Ethnicity – BAME acronym needs to be scrapped as it has been abused and misused, especially in education. When my youngest regressed as she got older – from liking school to hating it.

She was the classroom clown to getting into trouble, singled out and blamed for things, to detention to the point in Year 6. She ended up in Pupil Referral Unit (PRU) four days a week half days, or else she would get kicked out of school. She loved PRU, but she would classes were small but she was exposed to all sorts of behaviours that as she said “mum, I should not be here”, as she would tell me what happened in the classroom sessions. One thing I did learn from her attending this primary school PRU establishment! They were outstanding in how they worked with these SEMH challenged children and she did improve. But her needs were never really acknowledged as no one believed she was autistic.

In Secondary School Year 7 (September 2017) – things got worse. She was diagnosis with Severe Expressive Receptive Language October 2017 (by her Secondary School) and then Autism Spectrum Condition December 2017 (had to redo as the Neurological Specialist left the practise in the year and did not finalise her report, early in January 2017). Did it make any difference with her having a diagnosis? No it surely didn’t. Things turned for the worse when she refused to go to school and being placed in another alternative provision from her current school. She was placed in a unit that was like PRU. They wrote of my daughter and then turned to my parent skills and once again.

Then these uneducated professionals tell me “they work with autistic children and she has to learn”. The cheek of it. They placed her in a class of boys! How would that help her, when she was trying to understand her own needs. Failures will continue, until we make a stand! And one thing I have to say “ACADEMIES ARE NOT FIT FOR PURPOSE FOR AUTISTIC CHILDREN, IF THEY HAVE CHALLENGING BEHAVIOURS”.

Education ignoring the cultural needs and wants for many autistic children and young people is appalling. Which sadly majority of these kind of establishments and mainstream provisions have missed and have the the one size fits all attitude, failing children and young people.

Too many families right now need to the help! Unfortunately for many Black and Asian autistic parents who do need help, do not ask for many reasons. This really needs to change. COVID19 is holding no prisons.

Autism, BAME and COVID-19

Hidden Voices: Autistic Black Scholar and Autistic Mother

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

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.

Founder A2ndvoice Venessa Bobb
Dr. Laura Cockburn and Ken Greaves now Dr. Ken Greaves
Joshua Beckford and his father Knox Daniels – 2014

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

National Autistic Society looking at the Black, Asian and Minority Ethnic Communties

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 Professional Conference – February 2020

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.
Refrigerator Mothers – seen as a White condition and not as Black condition
  • 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.

February 2017

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.

Racial microaggression…

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 is Autism? Family Friend in May 2012

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.

#COVID19 #coronavirus #UK
UK government accused of having ‘no plan’ to tackle higher COVID-19 death rate among BAME people

Who is speaking on these issues?

BAME Learning Disabilities and/or Autism and both..

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.

Photo by Dreamstime

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…

A2ndvoice at The Autism Show Birmingham, 2016

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

Copyright © Venessa Bobb 2020

Interview with John Haderlein


Before reading this blog, this is John Haderlein’s personal view and his opinion. We have to respect, learn and accept other individuals views.

This short film highlights the struggles, misunderstanding and frustration of a mother seeking for her son to be “cured” of her son’s challenging behaviour and needing a solution to help him. She was trying to do her best, but in this case she lost her son through exorcism.

It’s not disrespecting other beliefs or practices, but allowing us to think before judging when one sees a child or adult acting inappropriately with a church or place of worship setting. Those who witness a meltdown will normally misunderstand or prejudge   something else as in this case.  “Junior” had sensory issues, he didn’t like to be touched and for those who understand what Autism is… Alot of educating, understanding and making everyone aware of their child or adults needs.

Society needs to embrace, respect and education to all lengths. Making sure everyone knows FACTS and not trial and error. When someone tells you that their child has Autism or they are on the Spectrum. Be honest and ask questions, so to help the individual and family….. We will use Autism Society a charity that are based in America to pinpoint, some of what he discusses.

Junior died in 2003, the DVD of “Junior – The Terrance Cottrell Story” was released in 2006. The question we have to ask ourselves and for those who have watched this film. Has things changed a great deal in 2014?

We need to be able to identify, recognise and support those who follow a faith. Autism affects all communities.


What is your connection to Autism?

My son, Eric, was born on June 5, 1996.  At 30 months, he was not speaking, and so a pediatrician recommended a screening.  The screening revealed signs of Autism.  We secured a diagnosis of “Autism and PDD/NOS” (pervasive development delay, not otherwise specified), and enrolled him in special education classes at 36 months (when he turned 3 years old).



How old is your son?

Eric is now 17 years old.


What was your understanding about Autism and do you think in 2014, there has been a great change than before?

When I was young, disability was little understood.  I first heard the term “Autism” in a college class.  It was pretty undefined, but I remembered it was really bad and that the child was in his own world – sort of on “auto pilot”.  Now that Autism is better screened, with 1 in 121 in the US being diagnosed with Autism, this disability is becoming more accepted.  New research has debunked prior scientific theories of bad mothering (in the 1960s Dr. Bruno Bettleheim, a University of Chicago professor researching Autistic children, blamed their Autism on cold, unfeeling “Refrigerator Mothers” – the name of another American documentary about Autism).


Do you think enough is being done for those with Autism and Aspergers?



Please explain the difference between a Neurotypical (NT) with challenging behaviour and challenging behaviour linked to Autism as there is so much misunderstanding and confusion amongst many parents and professionals that seem to overlook the condition?

People hear an autistic child scream or witness a full meltdown in public, and immediately blame the parent for not having control over their child, or conclude that the child is spoiled.   People don’t really want to know that there is brain imbalance or brain damage to explain these behaviors.  They just want the problem to go away, or they want to blame or attack the child or his parent(s).


What is failing those living, caring or educating those with Autism?

The Educational System.  Society’s views traditionally, although American mega-charities like “Autism Speaks” are trying to educate and inform people about what autism is, and is not, through the mass media of television, internet, etc.

“My own experiences before and after my son’s diagnosis was frustrating as support or understanding was based around the neurotypical way of thinking. He was extremely hard to manage, he wouldn’t listen, over hyperactive and impulsive behaviour and he just seem to get worse.  Nathaniel was selective to who he would listen to which misjudged and saw in eyes of other persons, he was misunderstood and just needed a firm talking to.

I clearly understand more now, that he was having a sensory overload and it was exactly his way of dealing with it. This was demonstrated by him blocking his ears, screaming, kicking, punching, running off, pushing or acting inappropriately, he would get worse when he was being touched or when in a loud and noisy environment.  Services were just not for him. He was not spoilt or having his own way. He was feeling discomfort, which was causing unnecessary pain and stress to him that I was not aware of. Now he is older he can tell me, what and how he feels, but sometimes I have to reassess a place or avoid him going as I can foresee what may happen. Despite negative comments whether going to church or anywhere.


Do you think that there is a stigma attached to when churchgoers sees a child misbehaving inappropriately?

Yes, more awareness is needed throughout all faith groups; it’s just not fair on any individual that has Autism or Aspergers.


What advice would you give, if the Church were not aware about Autism and Aspergers?

Read. Learn. Ask questions.  Get involved.  Don’t judge until you understand.


Please tell me more about what led to the documentary about Terrance Cottrell?

My son’s Autism led me to run a local chapter of the Autism Society of America.   As president of this local chapter, I became more keenly aware of bad things happening to Autistic children.  One died being tasered by police in Chicago’s suburban Des Plaines, Illinois.  Terrance Cottrell was the victim of a botched exorcism.  “Junior’s” case was mentioned on the American TV show, “Law and Order”, and the actual trial was broadcast on “Court TV”, as it was a sensational story (assumedly, because of the barbaric exorcism component).


Did this change the view of others about Autism?

Yes.  It does not seem necessary to have to tell people that Autism is a developmental disability, brain damage on a microscopic level, that is a processing dysfunction severely limiting socialization and communication.   But it was necessary, as some people still believe that disability is the product of demonic possession, and therefore a horrific exorcism would cure that.  What???   Autism is the product of sin?   What???  Are they mad?!?!??!


What are lessons learnt?

Don’t exorcise children.  Pray for them. Work with them.  Love your kids.  And how can we make a difference?  Inform, educate. Learn.


What suggestions can you give for those who may need to learn about Autism and Faith Groups?

Inform, educate. Learn.


As the interview was based around ‘Junior and the tragic circumstances leading to his death’, such stories need to be told to highlight how misinformation and lack of understanding about Autism can go wrong.


What advice can be given to anyone that attends a faith group, who may witness a child or adult who shows social challenging behavior?

As the father (Terrance Cottrell, Sr. says at the very end of the film (get to know your kid), as the police captain encouraged (learn everything you can about Autism).  Don’t rely on common knowledge.   Some people think autistic people are crazy – having a mental illness.  They are not.  Some people think they are possessed.  They are not.  Some people blame the moms. It’s not their fault.


What are you doing now?

Just raising my son.  As an attorney, I have been securing court-ordered guardianships so parents of autistic children can continue to assist their children after they turn 18 (in the US, one is considered to be an adult at 18, unless of court of law rules otherwise).   A guardianship hearing is held to determine whether a person is able to manage his or her own medical and financial affairs.  If they are not, the parent can become their legal guardian.


To find out more information about John Haderlein, Contact: or Wesbite:

Thank you to John Haderlein for taking time out to answer my questions and highlighting such a delicate situation.

For more information about A2ndvoice find us on Facebook: A2ndVoice Autism Support Group Tooting or check out website:


©2014 Venessa Bobb


Meet John Haderlein – Junior “Autism and Exorcism”


Junior, The Terrance Cottrell Story (2006)

Written and Directed by John Haderlein

This blog is so overdue, but had to say a special thank you to John Haderlein for authorising A2ndvoice in showing this untold story. This documentary has never been shown in the UK and is a story that needed to be told. John Haderlein kindly sent me my own personal copy to show on the day, but I really believe that everyone needs to learn to understand, how Autism can be misunderstood that can lead to a fatal. 

This short film highlights the difficulties that society can overlook and misdiagnose as something else, but sad to say. The church got caught up in the news.

The reason for me showing this documentary at Autism, Women & the BME Communities was due to many of my own challenges, experiences, to not knowing why my son’s unexplained behaviour was causing problems in the home, in the community  and also in a church setting.  There needs to be more inclusion within all Churches, if they are unable to help. Then what can be done in helping that family? Is your Church Inclusive of all disabilities?

Over the years I have found out that I was not alone as many other individuals, parents and families raising their children, teenagers to adults within their faith groups felt they were being judged and everyone seem to know how to deal with a child who seem to act up anywhere.  Questions and answers amongst many parents that I have spoken to. Keeping quiet, walking away or just accepting the emotional abuse as many wanted to be accepted…  No one is perfect, but one question I have to ask. Where are the professionals, specialists or parents within these settings that or who may have time to help a family in need amongst their congregation.

I rest my case.. Money will always be a problem, but for those who suffering in silence or not being heard. How could you help that family, if you do know of someone. We need to tackle Autism and Aspergers across the boarders and not just in the School Setting.

I learnt by trial and error, but not everyone is blessed to be in a place of worship, amongst those who do work within the school setting, child services to NHS who can support families who come through the door looking for help in ways that is not financial, but seeking their spiritual journey without being knocked down, because you have a child or teenager that is not able to control..

My son has made me more thick skin as I went through silence of confusion, hurt and betrayal from everyone who could not help me and it was not their fault.. It’s lack of knowledge, understanding and for those who are within their Faith Groups to speak up and not allow for those in the World to be quick to point at your place of worship for failing a family.

When my son “Nathaniel” was diagnosed in April 2008 with Autism and ADHD as explained in my first blog, I found it extremely difficult in seeking for support or guidance from those close to me. My form of communication and seeking for advice was to Google search anything that was linked to the Black Community (know that many will be angry, due to Autism Speak partnering with NCBI, but how many Black Churches in the UK and around the World doing the same) and Faith Groups.   No surprise, I found this documentary in three parts on You Tube, I shared the short film privately amongst afew people and church communities via email and Facebook, but didn’t want to alarm or offend anyone. At times I would go back and look at the video clip and remember how and still do til this day, hear people tell me my son is sick and he will get better with prayers or deliverance.  I just leave that alone….

Nearly 6 years on, with so many families complaining to me about how faith groups have alienated or misjudged them for their child’s inappropriate challenging behaviour as being possessed by demonic spirits, due to bad parenting or a broken home. Some excuses “God was punishing you”, some people just want to play God, but don’t get caught up in the argument.  Seek for the right support, whether it be in your place of worship or outside.  

This 30 minute documentary takes an uncompromising look at the bleak plight of autistic children, specifically the life and tragic death of Terrance Cottrell, Jr., an eight year-old, African-American and severely autistic boy suffocated, during an exorcism ceremony in Milwaukee in 2003.

He lived with his single mother, Patricia Cooper, in the impoverished northwest side. He was diagnosed with severe autism and was becoming increasingly combative.

Desperate about her son’s ability to stay in school, and unable to access appropriate community resources, Patricia turns to her church. This “church” is an informal grouping of six families with two self-ordained ministers at the helm.

Raymond Hemphill, an untrained minister, and a janitor by trade, offers to cure Terrance of his severe autism by performing “exorcism” ceremonies on the boy over the course of three weeks. The final night, August 22, 2003, ends in Terrance’s tragic death after Reverend Hemphill lies on the boy for over two hours in what turns out to be the final exorcism.

Raymond is charged in the boy’s death. A trial ensues, and Hemphill is convicted. Although he goes to prison, Terrance’s family, neighbours, teachers and friends are forever left to pick up the pieces of the life of a young boy they affectionately referred to as “Junior”.

With the current Center for Disease Control estimate of autism plaguing 1 in every 166 children, this malady is nothing short of an epidemic. What causes autism? Vaccines? Mercury? Environmental factors? Who is working on a cure? Where were the community resources for Patricia Cooper? How did this little boy slip through the cracks? Was his death the result of discrimination because he was African-American? Was it because he was poor?

“Junior: The Terrance Cottrell Story” frankly documents the bleak situation of autistic children, especially African-American children who live in poverty, and how, as this botched exorcism showed, the road to hell can be paved with good intentions.

A glimmer of hope is revealed in the cures that are being researched, in the parent groups that have been formed to deal with this burgeoning autism epidemic, in the tireless efforts of good-hearted educators who are trying to come up with academic solutions with less and less funding, and perhaps, in helping reshape the attitudes of society to accept persons that are simply “different” from the mainstream.

Interview with John Haderlein

Churches and Autism: It just needed to be said

Such a needed ministry in all churches and places of worship

Footprints in Time

I have been thinking about this topic for a while.  I had a Phone conversation with a friend and fellow Autism mom the other day that I can’t get out of my head. You see, her daughter was told AT CHURCH! that her parents are going to hell because they don’t come to church. Forget that the church KNOWS they have a child with Autism who keeps them at home. Forget the damage done to this child, and to her relationship with her brother because she has been told her parents are going to hell because they don’t go to church because they stay home to take care of her brother.

Church is SUPPOSED to be a place where we love even the least of these, where unconditional love and Christ’s example are shown. Families are getting shunned from churches because their child is “Too disruptive” , “too un-manageable” …

View original post 640 more words

Meet Jackie Pilgrim – Autism USA

Connecting with Jackie Pilgrim – an autistic mother raising an autistic child. Opened my eyes to many things….. We need to listen to autistic adults, we will learn something new and not third hand experience.

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, but you are able to download or find information about other Autistic Charities Worldwide, if you don’t see your country included, Contact:

Autism Charities around the World:

National Autistic Society – In other languages:

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.

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.

I found out through our conversation, not only was she a parent of an autistic child, but she was also autistic herself.  When you speak to an autistic parent, but in my case an autistic mother.  She was able to  give me a better understanding and definition of what autism and asperger syndrome was.

The day I got the diagnosis that my son was autistic, I was relieved that I could finally do something to help him.  But the annoying thing that I found frustrating was the lack of support given. The ADHD Specialist Nurse from St. Georges Hospital, South London was excellent, but she was over subscribed with new cases.  She was the only one that operated in the entire Borough of Wandsworth. That didn’t make sense as when she was off, that was it, you had to wait. But either way, she made time with home visits and did a referral to one of the National Autistic Society workshops – Early Bird Plus (it was free).  The aim of the 10 weeks workshop was for the parent/carer to be accompanied by a teacher or someone close to the child. It was difficult to get anyone to commit for the entire 10 weeks.  Denial is a dangerous thing.

Anyway, back to Jackie.  I wanted her to share her journey or experience as an autistic black woman and mother as society believe that autistics are not capable of raising their child proper and adequately. I disagree, Jackie Pilgrim is one of many autistic mothers who has shared her experience of raising her autistic son with me. There are many other autistic parents across the UK and worldwide that I keep in contact with. But sad that I am unable to help them as each Borough or Country have different rules and spend their budget according to their area.

What people need to understand, that autism does not discriminate, but when society ignores the diversity of cultures, beliefs and tradition. How can any family from the BME Commuities get the right answers to their specific need?

Once we spoke and highlighted the issues that we both faced. Her understanding was more deeper as she lived it first hand and now was raising her autistic son. Even though Jackie lives 4002 miles (6440 km) away we still can make a difference. There are many other great autistic mothers, autistic fathers and parents/carers of autistic children and adults making a difference. I will be sharing their experiences in due course.

But please read what Jackie was able to share with me.

Venessa: As an autistic mother and raising an autistic child, please explain to Neuro-typical (NT) parents and professionals how they are failing BME Children and adults?

Jackie and her son Hunter Jackie: I don’t want to use the term “failing” because there are so very many parents out there who are doing their best. There are going to be flaws in treatment because we have non-autistic doctors instructing non-autistic parents on how to raise an autistic child where there are no absolutes because the spectrum is so vast. There are no experts on the subject because there are no ONE SIZE FITS ALL answers. Besides, why would anyone want to claim being an expert on something when experts generally are not so receptive to new ideas and concepts? They pretty much think they have all the nuts in one bag and to attempt to claim expertise of Autism would be completely inaccurate…a contemptible misconception even. There’s not enough known about the cause or full effect of Autism to justify such a claim.

Neuro Typical parents as well and Autistic parents will simply have to wing it. Although I must say that the autistic parent has a deeper sense of what their child is experiencing and may address challenging issues in ways that are considered unconventional to the Neuro Typical professional and layman. We are able to utilize our ability to cope with our own challenges and pass those skills onto our child(ren). We are also more understanding and patient about those challenges.

The biggest mistake I have seen Neuro Typical parents make is taking professional advice as an absolute. One example of this is when a parent is ill advised to keep such rigid schedules that the child’s ability to cope with even the slightest measure of change is null. What is seemingly the answer to a series of initial problems can potentially lead to greater problems in the long run. So it is in the parent’s best interest to take the advice of your pediatrician, teachers, therapists or any other mental health professional into consideration, always keeping in mind that your child is an individual, not a clone. Do not focus all of your attention on the diagnosis. Focus your attention on the whole child. Recognize that your child does have feelings, personality, wants, desires and needs, etc. All of these things must be considered when making decisions and building skills in your child.

Keys to successfully parenting the autistic spectrum child:

  1. Throw away all feelings of guilt. You have done nothing wrong. It is NOT your FAULT that your child is autistic.
  2. Autism is not the end of the world; it is an opportunity to be well versed in two worlds.
  3. Be patient with your child and yourself.
  4. Seek healthy support for you and your family. Sometimes you will not get the support you need from extended family, that is okay, there are many online support groups and seek out family to family or parent to parent support in your local area.
  5. Educate yourself as much as you can about your child and autism.
  6. Remember…Autism is a spectrum disorder. Do not get caught up in comparisons.
  7. Think about natural family traits that your child may have inherited such as stubbornness, shyness, inquisitive, jokester. Even if you do not see these traits right away, that does not mean they do not exist. Test the waters in small intervals over time to see what personality traits may show.
  8. Set healthy parameters for your child within their ability.
  9. Foster your child’s abilities while working on their challenges.
  10. Communicate with you child about everything. Talk about the things that you are doing for them and the plans that you have made for the day. Describe what they are eating and build stories, songs and games around the things that are most important to them or the things that are common to them. This will help to build up awareness of themselves and their surroundings.
  11. Be creative about challenges.
  12. Remember, autism can present a one dimensional way of thinking about some things. Example: Your child may see you as mommy, but not as a teacher. Your child will develop trust within the capacity in which they first recognize you, but that does not mean they have that same level of trust or respect for you in other capacities such as teacher, therapist, nurse and so on. I am not speaking about actual job titles, but the many rolls you will assume simply by being a parent. As your rolls change to accommodate your child’s need, you must allow time for your child to develop trust for you within that roll. Addressing this will help with the anxiety the child may feel when you have to do new tasks with them or for them.
  13. Develop a dialog with your child or queues that alert the child when you need a break. Be consistent in the dialog you choose. It takes time, but before you know it you will be able to sneak a little time for yourself.
  14. Never be afraid to ask questions and if you are not satisfied with the answers ask someone else.
  15. If there are siblings, make sure they have moments of healthy involvement with each other (not just helping) and time as individuals.
  16. If you have a spouse, try to schedule short dates (you may not have the time or energy for a date night) but it helps to slow down enough for a hug and an I Love You. Make sure you touch base with your spouse frequently.
  17. Try to relax as much as you can when you can and a small chocolate treat almost never hurts.
  18. Show and tell your child that you love them everyday. Love is an everlasting lesson that they will never forget.
  19. Take deep breathes.
  20. Remember to love yourself too J

Venessa: What support do you believe is needed for those within the BME Community?

Jackie: We need every available support. When I talk about my diagnosis of Asperger’s Disorder or my son’s diagnosis of PDD-NOS many people turn to me and ask what that is. Most have never heard of such. But of course, there are those who say they know something about Autism because they’ve seen the movie Rain Man. Indeed a good movie, but it is claimed that the main character was not autistic, so how did this movie earn the unspoken notoriety for being the iconic introduction to ASD and literally the template to which we are compared? There’s just not enough information, understanding or dialog about Autism within BME communities, however, if by chance a shred of information is found and help is sought from medical professionals or mental health professionals, we are often lead to believe that our child(ren) cannot be on the spectrum for various reasons. What is well known and highly diagnosed in the BME community are ADHD and ADD. Though there are some similarities between ADD/ADHD and ASD along with evidence of ADD/ADHD presenting a comorbid relationship to ASD, our children are less likely to receive an Autism diagnosis as opposed to ADD/ADHD.

To be fair, not all of our children are misdiagnosed or undiagnosed. There is a small increase in autism diagnosis within the BME community. Still our children are typically diagnosed much later in life, usually between the ages of 3 and 7.5 years as opposed to caucasian children who are typically diagnosed around 18 months to 2.5 years.

In the US, one of the biggest steps towards improving autism awareness in BME communities is the involvement of our churches which are the staple force within BME communities. Because our churches are becoming more involved in autism awareness, more people are taking the literature seriously and are seeking more and more information. In recent past I have been approached by several Pastors who wish to speak with me about Autism. I am so very pleased to see this take place and I now have every hope that BME communities across the country and soon around the world will continue having an open dialog and seeking the necessary support that we need.

Venessa: Why do you think we need to address Autism in the BME Community, instead of just raising awareness for all?

Jackie: Because we need to know that we are not alone within our own communities. We need to see people that look like us talking about what it’s like to be on the spectrum or what it is like to raise a child on the spectrum in BME communities. The primary population represented in the ASD community is Caucasian. When have you ever seen a Black, Latino or any family other than

Caucasian talk about Autism on TV? You may see a few diverse faces scattered about on advertisements or literature. Books about Autism in BME communities are almost non-existent. Let’s face the facts; original science is based solely on the results found in studies of white male subjects. It has not been that long since science acknowledged females being on the spectrum which really set research on its edge because they had to stop and take another look at the dynamics of Autism. Females present Autism differently from males. In my opinion it was this shift in Autism research that allotted scientists to even consider looking at the possibility of finding Autism in diverse groups. The reality is many members of BME communities are under the misconception that Autism is a “white disease.” The level of ignorance is very high in BME communities, not because we are in denial so much as it is largely because until recent past we were not that interested in something that seemingly had nothing to do with us. We were and in many cases still are content with the overly diagnosed ADD/ADHD and accept whatever measure of support offered most of the time.

Social and cultural stigmas need to be addressed as well. These stigmas make it difficult to seek and accept the help that we need. For example, the church is the hub of our community. There are times we may approach church leaders or other entities for help or advice with things that frighten or confuse us. Many times the answers we hear are, it’s all in our head or that our child is possessed with an evil spirit and the child needs to be delivered; or some other ignorant or fear based excuse such as mothers are to blame. There are claims that mothers are either too lenient or too strict or too loving or too smothering and those maternal behaviors are what cause Autism in our children. Autism has been demonized and society is desperate for something or someone to blame. We who are part of the BME community have enough issues to contend with without the addition of being accused of causing something many of us do not even understand.

The best support we can offer BME communities is support from well advised members of our communities that are able to address and assist our understanding of Autism within our communities. If the necessary information in funneled into BME communities with the proper education applied, parents and individuals will be able to recognize that which has been hidden in plain sight all along. Autism affects all races, colors and creeds not just one racial, social or cultural group.

Where there is understanding there is ACCEPTANCE.

Where there is acceptance there is POWER.

Where there is power there is COURAGE.

Where there is courage there is CHANGE.

Venessa: I was told that autism is curable or is a mental illness; please explain from your perspective… so that a NT can understand the difference… (because they get on my nerves with telling me I am wrong)

Jackie: I personally do not believe Autism is curable; however some traits can be turned around or toned down. That is not to lend itself as a notion of a cure simply because one no longer “appears” to be autistic. Autism is not about a “look” it is about neurodiversity…a diverse way of thinking that causes differentials in the way we handle communication, relationships, social “norms,” daily issues and learning. Even if we do not have the “appearance” of autism we will still have hidden challenges. Autism traits change as one gets older. Some traits may dissipate over time while other may become more pronounced such as increase social anxiety. There’s even the possibility of developing new traits especially as our hormones change. These things have not yet been considered as the focus is primarily on children. Research needs to expand itself to teens, adults and seniors. I hope the scientists realize Autism does not go away in adulthood. WE need support too.

Venessa: How can churches do more in raising awareness about Autism?

Jackie: They can contact the National Black Church Initiative who recently partnered with Autism Speaks to begin a major push on getting Autism information out into BME communities. Encourage your church leaders to get involved. Contact the NBCI to find out how to partner with this initiative or possibly start an initiative program in your local area. I hope someday to see an International Black Church Initiative.

Here’s more information on the National Black Church Initiative:

The National Black Church Initiative (NBCI) is a coalition of 34,000 African-American and Latino churches working to eradicate racial disparities in healthcare, technology, education, housing, and the environment. NBCI’s mission is to provide critical wellness information to all of its members, congregants, churches and the public.

To find out more information about Jackie Pilgrim raising awareness in the  USA, she can be reached via  email: or find the group on Facebook: Autism’s Love: Making Connections

Thank you to Jackie Pilgrim for her contribution to Autism in the Black Community – My experience, which will be continued with more on raising awareness about Autism for all communities.

For more information about A2ndvoice find us on Facebook: or check out website:

©2013 Venessa Bobb


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:

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






©2013 Venessa Bobb