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.
Jackie 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: 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:
- Throw away all feelings of guilt. You have done nothing wrong. It is NOT your FAULT that your child is autistic.
- Autism is not the end of the world; it is an opportunity to be well versed in two worlds.
- Be patient with your child and yourself.
- 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.
- Educate yourself as much as you can about your child and autism.
- Remember…Autism is a spectrum disorder. Do not get caught up in comparisons.
- 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.
- Set healthy parameters for your child within their ability.
- Foster your child’s abilities while working on their challenges.
- 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.
- Be creative about challenges.
- 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.
- 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.
- Never be afraid to ask questions and if you are not satisfied with the answers ask someone else.
- If there are siblings, make sure they have moments of healthy involvement with each other (not just helping) and time as individuals.
- 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.
- Try to relax as much as you can when you can and a small chocolate treat almost never hurts.
- Show and tell your child that you love them everyday. Love is an everlasting lesson that they will never forget.
- Take deep breathes.
- 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: email@example.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
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