Interview: People with autism don’t need a cure, they need to feel signifcant and loved

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Summary: I initiated an email interview today with a childhood friend Jim Mosely. Below is what we layed out in respect to autism. Please keep in mind that the questions were all presented in one email. This was not a back and forth conversation. Note also that this interview was not edited for length.

Mosely talks about who he is and his contribution to the autism community. He shares personal stories, breakthroughs that he has witnessed, practical advice for caregivers, and much more.

Interview: People with autism don’t need a cure, they need to feel signifcant and loved: An interview with a private autism service provider

Having a passion and interest in natural health and nutrition I hear a great deal about disease prevention and cures, etc. I know a lot is hype, and profit and greed is the motivator, but I also believe that a lot of it has merit and value.

Naturally, in my studies I hear about autism and prevention, and that perhaps heavy metal toxins and/or vaccines may be the cause. I also hear that those with autism are here to deliver a special message to us. And perhaps we shouldn’t be focusing on how to “cure” them and instead listen to their message. With that said, if there is any validity to the Jenny McArthy story and how she essentially reversed autism in her son by changing his diet, it further blurs my stance on the topic.

But there is one thing that I am very clear on, which is that all human beings long for the same basic needs, one of the most important being love.

And, I know, having a daughter with special needs (she was born with Cornelia de Lange Syndrome or CdLS) that some individuals require extra special care and treatment, and that’s why I highly respect what it is you do day in and day out. Beyond words really.

I always jokingly like to start your story with “gangsta rapper turned voice for autism awareness,” but I know that there is much more to both sides of all that.

Q: I can’t tell people better than you can what it is you do each day to help individuals and families that require that extra special love having been touched with autism, so maybe you can tell us more about who you are and what you do?

Mosely: Well, first off, I wasn’t a gangsta rapper! Haha! Just a kid with a lot to say. As for my work in autism, I guess I stuck with it because many people wouldn’t and often times couldn’t. After my initial training with Behaviour Institute I knew there were so many families out there in need of assistance. I started out as a frontline worker. Going into families homes to work 1-on-1 with their children diagnosed with the disorder. The Dr. would create behaviour programs and protocols and I would be the one to implement them. Being one of a handful of men in the Toronto area in the field at the time the Dr I worked closely with took me under his wing and taught me things others didnt know. I was quickly promoted to Senior Therapist where I was responsible for overseeing the rookie frontline staff. Then I began writing the behaviour programs and training my staff how to run them. I was also responsible for conducting meetings with the families and all other caregivers as well as ensuring data was collected properly and keeping the Dr up to speed on each case. I wanted more so I was promoted to Consultant and the Dr and I wrote the “Home-Based Social Skills Program.” I presented the program to my peers during the 2001 ONTABA conference in Toronto.

Today and for the past 7 years I’ve been a private autism service provider. I realized early in my career that in order to fully understand what the children, their families and my staff were going through I needed to continue doing frontline work. So now I do daily sessions with my clients as well as write the behaviour programs, train staff, conduct multi-disiplinary meetings and create workshops for various communities around North America and present those workshops. I also Consult with a few families overseas who have no access to Consultants in their home countries.

Q: Reflecting on your experience with the many individuals that you have worked with, can you offer insight on the various ranges of behaviour patterns for individuals with autism? I know that there are varying degrees of severity (for lack of a better word) when it comes to CdLS, my guess is that is the case with autism as well?

Mosely: Absolutely! Autism is a spectrum disorder, meaning there is a wide range of difficulties and to varying degrees. There’s a saying, “Once you’ve met one person with autism, thats it! You’ve met one person with autism.” They are all individuals and no two people on the spectrum are the same. There are similarities and we use those similarities as a starting point when we first meet a child. Then we must fine tune all programs and protocols to meet the needs of the individual and their family dynamic. We tend to “label” the children in terms of their level of functioning. I dislike labels but the disorder is so variant that we often need the labels as an indicator of what we’re facing. For example, at the lower end of the scale are those diagnosed with Classic Autism. Often non-verbal, they find following multi-step instructions quite difficult, they often engage in self-stimulator behaviours (rocking, spinning, lining up objects, etc) at very high rates and they often lack the most basic social skills. At the high end of the spectrum are those diagnosed with Asperger’s Syndrome. People with Asperger’s typically have normal IQ levels or higher, tend to be extremely bright in one or two subjects but again, lack social skills and find it difficult to understand sarcasm and humor. However, people on the autistic spectrum can fall anywhere in between. Some people with Asperger’s engage in self-stim behaviours a lot and some with classic autism may stim rarely or in a way that is undetectable by the average person. After working with over 500 children, teens and adults with autism I’ve found that most prefer high levels of structure and routine. All have had social deficits and all can improve.

Q: What are some of the early behaviours of children that may indicate a need for further assessment into the possibility of autism?

Mosely: You can find lists of skill deficits all over the net but the ones that typically gain a red flag from me are:

- Failing to imitate actions when their parents sing simple songs like “if you’re happy and you know it” or failing to imitate and engage in a game of peek-a-boo.
- Lack of eye contact and avoidance of social situations (tends to stay away from other children at the park or in daycare).
- And lastly, when I ask parents to describe their child and they say, “he/she is a really good baby. They never cry!”

I’ve also had parents tell me that the child refuses to let dad pick them up. Or they never show emotions or give hugs.

Q: I know first hand that it can be tough to hear that your child may be dependent for their entire life. What are some words from your heart that you can share with those that have heard that news for the first time?

Mosely: Keep in mind, we are all dependent our entire lives, to some degree. I personally have no knowledge of how to properly butcher a cow so I go to the grocery store for my steaks. I’m not sure how to fly a jet so I’m thankful for pilots. We all have some deficits, we’re only human. Same goes for our children with autism.

I had a client diagnosed with classic autism, who wasn’t able to learn his colours after 4 solid years of teaching. I believe he could learn it, his school teachers, doctors and I just hadn’t been able to find the best way to teach the skill to him.

Have patience. And keep love in your heart. Make everything functional for the child and they will learn it.

My old client never had a reason to use colours. He was non-verbal and everyone in his life knew his likes and dislikes so he never needed to communicate that he wanted the blue popsicle because those closest to him knew he only ate red ones. We were able to teach that boy to play piano but not to distinguish between red and blue. He loves music and hearing it made him happy. He was thrilled to find out that he could make the sounds for himself and he spent his days laughing as he sat at the piano.

My words to parents facing the diagnosis, let your child be happy! Make them smile no matter what it takes! At the same time, expect them to grow. Expect them to follow your house rules and the rules of the schools and societies they live in. Expect them to face their fears and conquer them. They can do it! If taught in a loving, gentle way.

Q: When I see you I often commend you for the breakthroughs that you helped make happen for those touched by autism, but you are alway quick to point out that it is the individuals who are making the breakthroughs. I realize I didn’t say it as eloquently, but I’m hoping that you can elaborate on that a little.

Mosely: I’ve had 6 years of post-secondary education, coupled with 14 years of hands on work in the field. My text books taught me nothing about these people with autism. They {the individuals} taught me about them individually. They showed me that a little girl with no voice and no social etiquette could hum a soothing song to her injured baby brother. The text books said she was incapable of feeling empathy. The girl, herself, taught me that the doctors were wrong. My clients taught me that even if they couldn’t understand the words on a McDonald’s menu they could cleverly create a way to ensure everyone in the restaurant knew they wanted the strawberry shake and not the chocolate. They’ve shown me that even though they had the lowest grades in their schools they still had dreams of going to University. They showed me, better than any text book, media source or neurotypical person that people are people. All different but all want to feel welcomed and significant.

Q: Can you share one or more of the major breaktrhoughs that you have witnessed personally while working with an autisic child?

Mosely: We should refer to people on the spectrum as “people with autism.” They are people first. Autism is just a small part of who they are. It’s the outward things we see and measure. Deep down in there is a person. After all, do we call our family members with cancer “cancer man” or a person with long hair “long hair kid?” No. We’d say “look at that little girl with the long hair. Isn’t she beautiful?”. Why can’t we say the same about a child with autism?

I’ve personally had 9 children completely lose their diagnosis. Pretty remarkable to their parents and doctors. However, I didn’t cure them of anything. I was simply able to show them how to hide their autism when they were around people who didn’t care to understand them. We live in a very judgemental world. I’ve seen people who hadn’t spoken a single word in 15-16 years suddenly comfort their mothers by calling out, “mom.” Such a beautiful thing to see. I’ve seen a father call his daughter a monster because she couldn’t speak, feed herself, use the washroom, etc. But let me tell you, the look on his face was priceless when he walked in from work to overhear his daughter ask me if I could take her to the park, then watch her lace up her rollerblades and lead the way!

I’ve seen something miraculous from each person I’ve ever worked with. My very first client read a story to me during his initial assessment. I went back in the observation room to ask the doctor and his parents what I should do next and they said, “Who knows? We had no idea he could read!” That’s called being hyperlexic. Some kids are able to recognize patterns so well they can teach themselves to read at extremely early ages! That same boy used geography as his self-stim behaviour. He was able to create full cities out of lined paper. Complete with skyscrapers, neighbourhoods, roads and rail lines! Who showed him that? Himself!
A miraculous thing to me that others may not see as such: I had a young boy, a twin, diagnosed with Fragile X syndrome. The boy would hit himself in the head several hundred times per day. After a few weeks of working with him he only struck himself 10 times per day. His parents told me I saved their sons life. I told them he saved himself. He’s the one that stopped hitting.

Q: Can you suggest any online resources for families that have loved ones that have autism?

Mosely: There are so many these days. Off the top of my head I’d have to say Geneva Centre for autism, any resource web site that allows you to print out visuals and those that offer suggestions for activities. I’d also suggest parents and family members join support groups and create networks for themselves online and in the real world. I belong to a number of support groups and I learn so much by listening to and reading about others coping with the diagnosis. I often offer my services to members of my groups and there are generally a few compassionate caregivers in each group to provide assistance and links. I can’t necessarily name specifics because what I take from one site may be upsetting to someone living a different experience than me. Look around, try them out and if they help, stick around. If they don’t help move on. Some people like autism speaks. They bother me because they always talk about a cure. I don’t believe you can cure a person with autism. It’s simply who they are. It’s like saying you can cure me from having black skin. Or cure a white person of their pale skin. No, no, no… people are different and we need to accept each other as we are. As long as you’re not hurting someone else you’re OK in my book. If you help others, you’re my hero!

Q: I know that you can’t speak for all cities and towns, but do you have any general information for parents about where they could reach out for care beyond the traditional? I could be wrong, but my guess is that in general, what you do, is a specialized practice that isn’t offered by default in all municipalities?

Mosely: My methods and my brand of autism service is slightly different than most others simply because of who I am. I’ve seen struggle, I’ve lived a very different life than others so what I put out is naturally going to be a tad different. But in Canada, parents can find resources and links through their family doctors, pediatricians, and school staff. In Ontario we have the School Support Program (I used to be AUTISM spectrum Disorder Consultant for the school boards in Southern Ontario.) We were there to educate the educators and provide assistance in the schools and community. Local hospitals would be able to help you find trusted doctors as well. Do a Google search for Board certified behaviour for any lists in your region and there are lists on the ‘net to help parents know what to look for in a good service provider.

Q: What is one small act that anyone can do to increase awareness of autism and to help show love to the autism community?

Mosely: Offer to have play dates with their children and a child with autism in their neighborhoods!!! That’s HUGE to the families! It’ll also let the parents see how the child with autism behaves and hopefully once they understand the child better they can offer to babysit or provide some level of respite. The most important thing a person can do to help a family dealing with the diagnosis… REMAIN THEIR FRIEND! Don’t shy away because the families living with the diagnosis are already so isolated. Losing a friend can be heartbreaking. Just be a friend. Smile, offer a joke, invite for tea, just be a friend.

Q: What is one practical tip that you can offer a caregiver to help make break throughs with their child from home?

Mosely: Take the time to understand the child. Listen to the child! Even those without a voice speak loud and clear through their actions. Problematic behaviour is not meant to piss you off. It’s often the only way the child has to let you know something isn’t right. Be patient. Enter into their world if you expect them to enter into yours.

Q: I know that this can get controversial, so please ignore this question if you wish. I also know that you are coming from a place of acceptance for what is and doing your part in terms of the reality of things. But I’m interested to know your take on prevention and reversal when it comes to autism. I know that this is an open ended question but that was done deliberately to give you freedom to answer it how you wish.

Mosely: As I stated earlier, I do not believe in a cure. There are breakthroughs being made regularly now regarding the genetic side of autism. Eventually there may be medications to alter the problematic issues faced by those with autism but to me, thats the old way of looking at things. From a medical perspective, rather than fix the kid to better fit into our society why dont we take a long hard look at how we can fix our societies so that they can accept differences? Just because I went to University doesn’t mean I was “fixed” from growing up in the projects. I’m still that same guy from Millen street, I just know a few more things now. A person with autism can learn new things and learn to behave in new ways but at the end of the day they are still them at their core. So replace reversal with learned. As far as prevention goes, sure, we can probably lower rates of autism by changing our environment. Making sure the foods we eat are clean and not full of chemicals and junk! I bet that would help! But then food prices would be so expensive we’d face the problem of starvation and everything that goes along with it. The question is, do the world’s citizens care enough to change as a whole?

Q: Finally, do you have any personal resources or contact info that you’d like to share if anyone would like to reach out to you? A newsletter, Facebook page, web site, etc.?

Mosely: I will soon have all of that stuff but for now I’m content just having my clients reach out to me through word of mouth. There are so many cases out there that I stay pretty busy just from the referrals I get in my small circles. I plan to expand in the near future but I enjoy giving the individualized care that I can offer my small client base. If any of your readers would like to contact me they can message me at moselybehaviour AT gmail DOT com.

If they write to me to let me know some of the difficulties they are facing I will always write them back and offer any assistance I can. They can also feel free to contact me to help them locate services in their areas. I do travel globally to consult with families and school boards so I’m open to anything BUT… I maintain a small list of clients at all times so that I can give my all to those I serve. I do see my position as working to put myself out of work so I help, then move on to help the next family in need. I hope to help all who contact me, eventually. I just run a dedicated, tight knit little business.

Oh, they can also find me on LinkedIn – James Mosely

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