Interview with John Haderlein

Tags

, , , , , , ,

Image

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).

 

Image

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?

No

 

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: john@bklaw1.com or Wesbite: www.bklaw1.com

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: a2ndvoice.com

 

©2014 Venessa Bobb

 

Advertisements

Meet John Haderlein – Junior “Autism and Exorcism”

Tags

, , , , , , , , ,

Image

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

Tags

, , , , , , , ,

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: http://www.autism.org.uk/news-and-events/about-the-nas/contact-us.aspx

Autism Charities around the World: http://www.autism.org.uk/our-services/advice-and-information-services/help-outside-the-uk/autism-charities-round-the-world.aspx

National Autistic Society – In other languages: http://www.autism.org.uk/about-autism/in-other-languages.aspx

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.

http://www.autismspeaks.org/science/science-news/autism-speaks-black-churches-partner-advance-early-intervention

To find out more information about Jackie Pilgrim raising awareness in the  USA, she can be reached via  email: autismslove@gmail.com or find the group on Facebook: Autism’s Love: Making Connections https://www.facebook.com/pages/Autisms-Love-Making-Connections/228164873912367?ref=hl

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:https://www.facebook.com/A2ndVoiceAutismSupportGroupTooting or check out website: http://a2ndvoice.com

©2013 Venessa Bobb

 

Image

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

Tags

, , , , , , , , , , , , , , , , , , , ,

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, but you are able to download or find information about other Autistic Charities Worldwide, if you don’t see your country included, Contact: http://www.autism.org.uk/news-and-events/about-the-nas/contact-us.aspx

Autism Charities around the World: http://www.autism.org.uk/our-services/advice-and-information-services/help-outside-the-uk/autism-charities-round-the-world.aspx

National Autistic Society – In other languages: http://www.autism.org.uk/about-autism/in-other-languages.aspx

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 months 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 – via Facebook: https://www.facebook.com/A2ndVoiceAutismSupportGroupTooting or check out our website: http://a2ndvoice.com

©2013 Venessa Bobb