I was scrolling through my social media feeds, much as I do every day, partly for professional reasons and partly for personal reasons. I wasn’t expecting to see anything beyond the usual “here’s what I’m having for dinner” type posts or the political musings that seem to flood most every social media outlet these days.
Social media, without a doubt, can be a great tool for promoting your business or just staying in touch with family and friends. But it also can be mind-numbingly mundane.
My morning pass was proving to be more of the second variety until I scrolled past some words that seemed to jump right off the Facebook post and hit me squarely in the face:
He apologized one too many times, and I realized he should
not apologize for who he is, rather that I should apologize
for thinking he should be anything but himself.
Those words could apply to so many situations in life. For me, they immediately made me think of my own 13-year-old son, who was diagnosed with autism at the age of 3. We were fortunate in that his diagnosis came early in life, enabling him to receive the kind of crucial early intervention services that have made all the difference in the world. But then I got to thinking about all the things my son learns he must do every day to fit the norm society has set for him, and the reality of those words brought tears to my eyes. Why can’t he just be accepted for who he is? Why should he have to mold himself into the societal norms and standards just so others deem him worthy? Those 30 words caused me to take a long, hard look at my stance on how individuals with autism should be treated, and just how much conforming they should be expected to do. It wasn’t the first time I had wondered why the rest of society can’t learn to be more accepting. But it was one of the few times I felt so strongly about it that I have made it my new mission to push for more understanding and acceptance of those on the spectrum – to help others learn how to celebrate the beauty of neurodiversity rather than punishing it.
I have Tiffany Hammond to thank for my newfound drive for autism advocacy. A lifelong Texan and mother of two children on opposite ends of the autism spectrum, she recently started a blog called 2 Dollops of Autism. If you haven’t checked it out, you don’t know what you’re missing. Run, don’t walk, right on over to her site and check her out. She also has a Facebook page. I asked Tiffany if she would share some of her most private thoughts with us concerning her autism advocacy, her two beautiful children, Josiah and Aidan, and the motivation that keeps her going when she’d like nothing more than to quit.
“I decided to launch (2 Dollops) because writing helps me deal with my most intense emotions,” said Ms. Hammond. “I bottle things up so much that it literally hurts me and others around me.” She’s not just talking about the negative emotions, but also the positive ones. “I needed a way to let those out, so one day I picked up a journal and I didn’t stop writing until I filled three of them in a day.”
Like other parents of children with autism, Ms. Hammond gravitated toward autism support groups. What she found was other parents who were struggling with the same issues that she had already gone through with her boys. That’s when she decided to take her knowledge and use it to help others who were struggling. “Then I started to make my own posts. People received them so well I thought maybe I could share more advice and tips, and maybe eventually my own story.”
Glazing the Ham
2 Dollops of Autism isn’t the first time Ms. Hammond has blogged about her personal experiences with autism.
Several years ago, she decided to get her proverbial toes wet by launching a blog she called GlazedHamm. While she shared some of her thoughts and experiences about autism on the blog, she admits she didn’t take it seriously, neglected it on most days and didn’t own the content she was posting because it was being housed on a free blogging site, not her own domain.
“I shut it down and a couple years later, decided it was time to start back up again. I promised I would take it more seriously because writing is my therapy. The challenge in creating new content to put onto a site is my therapy.”
Thus was born 2 Dollops of Autism.
Finding a Community
Everyone needs their tribe. People who love and accept them. Others who know what it is like to struggle with the same things you do. Individuals on the spectrum often struggle to find their tribe, even among others who share their diagnosis.
“The hardest part about finding a community is that autism exists on a spectrum, and so do their support groups,” said Ms. Hammond. “Then you have groups for those with severe autism, those for high-functioning autism . . . it’s hard to belong to just one group when so many address the many sides of autism.”
While diversifying support for those on the autism spectrum based on severity can be a good thing in some respects, it also comes with its disadvantages. Ms. Hammond has one child who is classified with high-functioning autism, while the other is more severe, making the challenge of finding all the support she needs for both of her children in one place. “On one hand, the group that caters to your specific needs (i.e. severe autism parenting group) can provide you with a ton of support from others who are often drowned out in other groups, but then as a parent of a child on the moderate to high end of the spectrum, I often find many of their posts to be demeaning towards that end of the spectrum. Same with being in other groups and their comments towards parents of children with severe autism.”
She hopes that her blog will provide the kind of support that applies to all parents of children with autism, regardless of their placement on the spectrum.
From Shaun Murphy to Rainman
While struggling to find a place among the autism community can be difficult, it can be even more so when trying to fit in among those who deem themselves as neurotypical.
The hardest part about finding community support from the general public is that for the most part, the public's knowledge of autism comes from how they see autism portrayed in film and television, not from actual interaction with someone on the spectrum. With estimates of 1 in every 59 people having autism, Ms. Hammond said it’s hard to imagine that there is anyone out there who doesn't know someone who has autism. “I'm not one of those people who views the general public as purposefully unaccepting and unaccommodating. I think it's that they simply do not know what to do, they do not know how to respond. They don't know what kind of help and support that our loved ones with autism actually need. So they see someone like my oldest, who isn't like Dr. Shaun Murphy on “The Good Doctor,” and they don't know how to respond. They do not know what to do. They don't know what he needs. And it's much easier to ignore the problem than it is to address it.” As a result, Ms. Hammond said she believes there are many communities that are underserving this population.
“And then you have those with autism like my youngest, who is more like Dr. Shaun Murphy than my oldest, but they still do not understand his kind of autism. They think it’s quirks and intense shyness. They assume that he will be independent, just as they are, because he is verbal and can do many of the things they can do.” Ms. Hammond said her youngest son’s challenges are written off, with the attitude from some that he should know better. “More understanding is given to my child who is severely impacted by autism than my youngest. The general public does not know what autism actually is, and once they do, they'll be better able to address it.”
It is a large part of why she still supports autism awareness and not simply autism acceptance.
Common Myths and Misconceptions
There are a lot of misconceptions and downright myths when it comes to the general population’s understanding of the autism spectrum. “Not all those with autism are ‘Rainmen,” nor do they have some special hidden talent that will blow your mind,” said Ms. Hammond.
Autism is a social-relational disorder, meaning there are deficits in how individuals with autism interact with the world and other people. “You do not realize how important it is for a human to engage with the world until you have met someone who chooses to not do so at all. How we develop biologically, psychologically, emotionally, and physically depends on our interactions and connections with other humans,” said Ms. Hammond. “Because of their autism, they have deficits in communication, relating to others, and forming connections.”
One such misconception is that of individuals on the autism spectrum being unable to learn. For example, speech is learned by watching those closest to us and engaging with them. Those with autism are in their own world and they do not engage with others, unless it is on their terms. This can result in speech delays. “People need to understand that simply because someone with autism is delayed or severely impacted in one (or more) areas, doesn't mean that they cannot learn,” she said. “They can still develop these skills. Humans are lifelong learners, including those with autism.”
One of the biggest myths about those with autism – and one that is upsetting to many on the spectrum – is the belief that they do not desire a connection with others. “Just because someone has delays or impairments doesn't mean that they do not exhibit any signs of connection with others,” said Ms. Hammond. “Those with autism can show love and emotion for others, they just show it differently. Treat them with dignity and respect, accommodate for their needs, address their deficits appropriately, build up their strengths, and accept them. They have feelings and they understand more than people think.”
The Attitude of Gratitude
Ms. Hammond doesn’t pull any punches when asked what it’s like to live with autism every day. “My attitude dealing with autism every day, all day, all year long? It's going to suck. It really is. It's also going to be beautiful as hell too. I cry so much, but I also celebrate so many successes that my boys have because I put in the work to get them there. It's okay to cry, to get frustrated, angry. I do all the time, but I don't live in those moments. I have work to do. I can't spend days crying in my room wanting to give up, but I also cannot neglect my own feelings.”
Ms. Hammond said she allows herself to cry and be angry because she knows if she keeps it bottled up, she eventually will explode, which is not good for anyone. “So let it out. Take some time for yourself. Self-care is taking care of your children. Make sure you are carving out time for yourself. Then come back refreshed, ready to take on the world again.”
She said she has come to the realization that autism is marked by periods of connection and disconnection. “You're going to have so many ups and downs, as are your children. If you spend every waking moment forcing them to enter your world, you're going to be met with pushback, and you damage their trust in you.” Instead, she has chosen to let her children lead the way, to enter their world when they leave hers. When they venture back into her world, she uses that time to work with them, building skills. “I don't embrace the waves as they hit; you get knocked down every single time. I ride the waves. I flow as my children flow, and I adjust often.”
Mom, Advocate, College Graduate
One of the most inspiring things about Tiffany Hammond isn’t that she’s raising two kids on the spectrum while spending countless hours helping others. It’s the fact that she doing it all while going back to school full time.
Already in possession of a bachelor’s degree, she decided to pursue her master’s degree in Applied Psychology with a concentration in Developmental Psychology. She is on track to graduate this May.
While going back to school was a challenge, she said technology helped out…a lot. “Colleges and Universities push to make education more accessible to more students – and probably to make more money – and opened up so many opportunities for persons like me to obtain degrees online. When I received my bachelor's years ago, there weren't that many online degree programs. But now, so many schools now offer online degrees. It wasn't hard for me to find a school with the program I wanted and jump right on it.” Ms. Hammond said she is able to learn around her children’s schedule, thanks to courses that allow her to test when she is ready and to turn in assignments whenever she chooses, so long as it’s before the due date. “This freed me up to attend to my children during the day and do my own schooling at night.”
In addition to all that she already is doing for the autism community, Ms. Hammond also works as a volunteer advocacy ambassador with Autism Speaks. The position requires her to work with her local Congress members at the federal level to push through initiatives that are helpful to those with autism. A major part of their goals for this year is to get as many members as they can to join the bipartisan Autism Caucus and re-authorization of the Autism Cares Act, which is the foundation for all federal efforts surrounding autism.
She also is working hard to get reform in Texas, a state she affectionately refers to as virtually dead in terms of care, supports and services for those with disabilities. “This desperately needs to change. There are wait lists for the Medicaid Waiver programs that are decades long. There is a push to enact policy that will reduce the wait list.” One measure she is focusing on heavily is enabling Medicaid to cover Applied Behavioral Analysis (ABA) Therapy, which is considered the gold standard for autism therapy. The passage of the bill will not only benefit her two children, but countless others across the state of Texas.
Expanding medical marijuana laws also is a top priority for her, as well as increasing the pay for personal healthcare workers. “There are many, many issues with Texas and I am trying to address as many as I can, but I think if I spread myself too thin, they won't get the necessary attention that they need. So, I stick with a few at a time so that I can go all in on them. Once I graduate in May, I can focus a lot more on advocacy.”
During the month of April – which is dedicated to autism awareness and acceptance – Ms. Hammond will be creating some Zines with her youngest son, whose creative mind will play an essential role in spreading the message of acceptance.
The 2 Dollops of Autism blog also will include lots of tips and awareness items, not only this month, but in the many months to follow. ”I hope that through my site, I can help other families like ours see that not only are they not alone, but they can get through it, there's always light at the end of the tunnel, sometimes you just need the right tools to see it. I am there to help them find the light.”
Shari L. Berg is the owner/operator of The Write Reflection, and a writing professional for 25 years.