How to Avoid Nude Hikers - The Power of Support

Autism advocates talk a lot about how we need to “support” people on the spectrum.

But when we say “autistic people need support” what does that actually mean?

It means giving someone access to an item/activity/service/modification that eliminates or reduces the challenges that are caused by their disability.

Some people have this idea that providing support and accommodations means a person is getting “the easy way out”. As an autistic person myself, I want to explain to you why that is not the case. Let’s start by talking about what “support” DOESN’T mean. Giving someone support does not mean that tasks or activities are made easy. Having support does not mean that all struggles associated with the task have been eliminated.

Here’s an example to help illustrate what I mean: Hikers like to take long walks outside for fun, for exercise, as a personal challenge or because they’re crazy, or some combination of those reasons. Hiking can be incredibly difficult because it requires someone to be in decent physical shape and have a certain amount of motivation. Hikers do certain things to support themselves so that they can reach their goals. This can include wearing hiking boots, carrying a backpack, or wearing bug spray. Just because they’re wearing hiking boots does not mean the hike becomes easy. Having a backpack will not make the hike shorter, and bug spray won’t mean they’ll never encounter pests. However, these tools provide support in making the hike possible for the hiker.

Now imagine a hiker who is motivated to hike a long distance on a difficult trail, but this time, the hiker is completely naked and isn’t carrying anything. This hiker is unsupported and will face all the same challenges of the hike, but now they have the additional challenge on top of it all, which is completing the hike in the nude. They will face struggles with cuts on their feet, the inability to carry water or supplies and they will have no protection from the elements. 

Receiving support as a disabled person is much like giving clothing and supplies to a hiker. The support does not eliminate the challenging components of the task, but it does make the challenging pieces manageable.

As a person with a disability, having access to therapies, sensory tools, medical care, and modifications is equivalent to a hiker putting on boots, protective clothing, and carrying supplies. It does not make the activity or task easy and it does not eliminate the struggle involved. It just eases the additional and unnecessary difficulties caused by having a disability in a world that is not designed for nude hikers.

The Need to be Taught

After a child receives an autism diagnosis, the family is often encouraged to seek out therapy for the child. But many have been questioning why autistic kids need therapy. 

As someone on the spectrum myself, I can tell you that autistic people learn things differently. 

Sometimes we struggle because we are missing information and skills that other people seem to learn naturally. Experiencing that feeling growing up was extremely frustrating!

Many people are aware that picking up on subtle cues is not often a strength in autistic people, sometimes we need to be explicitly taught certain skills in order to be successful.

As kids get older, social skills get more complex. When I was a teenager, I had trouble knowing how to start conversations with my peers. No matter how many times I saw them start conversations with each other, I had a really hard time figuring out how to do it myself. 

I had to be coached specifically on HOW to use various conversation starters.

People around me seemed to naturally understand the give and take and the surface-level humor involved in 

the small talk that starts conversations.

Without someone sitting down with me and teaching me what I needed to do to accomplish my goal of starting a conversation with a peer, I would’ve experienced significantly more frustration as a result of being unable to connect with those in my environment.

This is one example of how therapy can be useful to autistic kids because it can explicitly and systematically teach the skills they want to learn.

When kids are taught these skills in a way that makes sense to them, they will be able to take full advantage of each opportunity they come across. In my case, I had plenty of opportunities to start conversations with my peers, but sometimes, the opportunity itself is not enough.

When to share ...

I have “the kind of autism” you don’t think I have until I tell you I have it. 

When I tell people I’ve been diagnosed with ASD, their responses can be anything from “oh, that makes sense now”, to “there’s no way, you seem so normal!” Although, my personal favorite was that one time someone asked, “are you sure?”

After my mom talked to me more about my autism diagnosis in high school, I would sometimes share this information with people in my friend groups and extracurricular activities. I learned the “hard way” that not everyone will have the same response, and furthermore, not everyone would meet it with kindness or understanding.

It only took a couple of bad experiences for me to decide I didn’t want to share that information with people who didn’t absolutely need to know. I even had a system for determining who “needed to know”. There were 3 circumstances in which I used to disclose my autism diagnosis. First was medical professionals, not just for obvious reasons, but also because I have an extreme needle phobia, and I knew I needed to be upfront about that so they wouldn’t be surprised by my response. The second circumstance was first responders or other similar authorities. During an interaction with law enforcement, for example, I thought it’d be wise to disclose my diagnosis in case my behavior at any point seemed “suspicious”. Lack of eye contact or nervousness can sometimes cause law enforcement to believe a person has something to hide, when in fact they may just have autism. The third circumstance in which I used to disclose my diagnosis was in social situations wherein others having a better understanding of my behavior would result in an improved outcome. Here’s an example, if I was with a group of people, I’d often try to make unexpected jokes in order to get them to laugh. However, sometimes I didn’t always get a good response to those jokes, or worse, some may have been unintentionally offensive. Disclosing my autism diagnosis would often help mitigate the effects of my behavior. 

This system of rules served me well for many years. I was able to protect my own privacy while still being able to advocate for myself when necessary. This system also served as a way to shield me from unnecessary criticism from casual friends and acquaintances. This was something I was particularly concerned about after having a boy stand up and walk away from a date after I told him about my autism.

When I was 24, I received the incredible opportunity to participate in the Netflix series Love On The Spectrum. After the show aired, my information was online and incredibly easy to find. This was something I was prepared for. However, it did make some alterations to my system of disclosing my diagnosis to others. 

Because I’ve had so much practice in recent months talking about my diagnosis publicly, I’ve been able to get more comfortable with it. Additionally, the autism community continues to make great strides in increasing social acceptance of autism. As a result, I now share my diagnosis whenever it’s relevant to the conversation or if someone else could gain something positive from knowing I am on the spectrum.

When it comes to someone’s private medical information, I don’t believe there is a “right” or “wrong” answer to how or even if it should be shared with others. Some people are an “open book” and share information freely about themselves. Others are more private and might benefit from developing a system like mine to help them decide if they should disclose their diagnosis.

Medical vs. Social Disability Debate

There’s an ongoing debate about the medical vs. social model of disability. 

The medical model says that disability is bad and it holds people back. 

Disability is a personal problem and it is each person’s duty to find ways to accommodate their own needs. If the disability were lessened or eliminated the disabled person wouldn’t struggle.

The social model says that disability is neither good or bad, just a neutral difference like race or gender. 

The problems disabled people face are not due to the disability but rather the barriers put in place by an inaccessible society. 

Making society more accessible will fix most of the problems disabled people face. 

As both a person with a disability as well as a provider of services to disabled people, I see both sides.

If society were not stingy with accommodations, our world could be made a lot more accessible. If the social barriers relating to disability were eliminated, finding community and social acceptance would be so much easier for disabled people!

That said, there are some negative aspects of disability that will 

never be alleviated by societal changes alone. 

No amount of accommodations that 

can teach someone an important life skill they do not currently have. 

In terms of sensory accommodations, turning the lights and volume down is great. 

But there are no changes that could be made to the physical environment 

that could teach a person skills to communicate. 

The problem with this debate is that it’s drawing from 2 extreme views. 

Problems (no matter what their cause) are rarely solved by extreme solutions. 

A more moderate takeaway from this debate would offer

 the greatest chance at the pursuit of happiness for disabled people. 

For me, that sounds like, advocating for society to 

be more willing to provide accommodations and increasing social acceptance of disability. 

I acknowledge that my autism makes things challenging

 sometimes and that’s ok, and that’s not anyone’s fault, 

it just is. And I’ll keep finding new ways to adapt.

Autism and Tips for Making Friends

Autism, by definition, comes with a set of social difficulties that will manifest differently in every individual. Some of us struggle with reciprocal conversation and eye contact while others struggle with the “natural” flow of turn-taking within games and sharing of interests. 

Wherever the challenge lies specifically, it appears to be a universal experience among people on the spectrum to have difficulty making and keeping friends.

Some people incorrectly assume that we don’t want friendships or aren’t interested in connecting with others. It’s important to note that just because someone has difficulty with something doesn't mean they aren’t interested in it.

In fact, many autistic people report feeling isolated and longing for friendships but are unsure of how to pursue them.

As someone diagnosed with autism who provides social skills instruction to kids and teens on the spectrum, here are 3 tips for making friends when your brain works differently:

1.    “Find your tribe”. Autistic people tend to have strong interests in certain topics. This can be used as a way of connecting with other people. Even those with “unusual” interests (like ceiling fans, insects, or flags), can find others who share that interest with them. It just might take some internet research to find those groups, but they’re definitely out there! People on the spectrum often have the ability to retain large amounts of information regarding their area of interest and are often an asset to any special interest group!

2.    Don’t be discouraged by age differences. Younger children may find it easier to get along with older children. The opposite is true as well. Older children can be appealing to interact with because they’re less likely to make spontaneous loud noises and may be easier to negotiate with. Older children may also be more patient with language and social challenges. On the other hand, younger children may not notice some of the autism-related challenges as much and therefore not be caught off guard by stimming behaviors or social blunders.

3.    Recognize the significance of parallel play. This is when two or more people are doing the same or similar activities in proximity to one another. This could be two children building two different Lego houses sitting on the same rug. It could be a group of teens playing different videos on the same couch or reading a book in the same room. Parallel play offers companionship without the pressure of social interaction. Feelings of companionship often lead to having a sense of community, and this can lead to increased social interactions.

I cannot stress enough the importance of having the “right” group of friends. These are people who are not only tolerant of our differences but embrace them. Sometimes we find this in people who have similar differences themselves. Other times we find this in people who like the same things we do, sometimes we find this in people who aren’t our same age.

It takes time to both find the “right people” and build friendship skills. Unfortunately, this can mean a lot of trial and error, but it’s worth it in the end when we finally see those connections begin to develop!

Let's Talk About Meltdowns

A “meltdown” is an intense emotional and behavioral response to an overwhelming situation. Metldowns differ from tantrums in that they are not due to the child being manipulative or poorly disciplined. Meltdowns are often the result of the situational demand exceeding the person’s current skill set in that moment. 

Meltdowns can be physically and emotionally draining for everyone involved. 

Let’s talk about strategies and tips for helping an autistic person through a meltdown. 

Some general dos and don’ts:

DON’T: yell, talk over the person, argue, tell them to stop or calm down.

Most people, children especially, cannot reason in an extremely heightened emotional state.

DO: speak at a normal or lowered volume, give choices, and give increased personal space (if it’s safe).

Priority number one is always to make sure the person having the meltdown and others are not in any physical danger. 

Next, try and give the person as much privacy as possible. This may look like getting the person to a private room, bathroom, or less occupied space. 

We can’t control when a meltdown happens, and when they do, they are never our proudest moments. Giving us as much privacy as possible perseveres our dignity in those challenging situations. Having privacy, especially during these times becomes increasingly important as autistic people get older.

You can comfort the person by letting them know you’re available to assist. Be clear in what assistance you are able to provide.

Example: “I’m here to help if you need me. It looks like it might be too loud in here, I can take a walk with you, or I can bring you headphones.”

You may need to allow the person some extra time to give you a response. 

Tell the person what their options are. 

Example: “I understand that you’re upset about the bakery closing early today, that really stinks. Right now, our options are to get cookies from the grocery store, or we can make some together at home.” 

You may need to wait (possibly an inconvenient amount of time) for the person to be calm enough to make a new choice, move on, or be able to problem solve.

Sometimes the only thing you can do is provide the options and wait until the person has calmed down enough to make a decision and/or move on with their day. After they are completely calm and the incident is over, that could be a good time to talk with them about what happened, and what could be done differently next time.

Remember that you can’t problem solve when a person is in crisis. A person having a meltdown isn’t giving you a hard time, they’re having a hard time.

My Autism is Showing!

I am 25 years old and I am diagnosed with autism that has been described as “high functioning.” There is a broad misconception in the autism community that so-called “high functioning autism” means “easy autism.” And while it’s largely true that those of us labeled “high functioning” tend to have average or above-average language abilities, that doesn’t mean things are “easy” for us.

Many autistic people who are very language-abled can (whether by conscious effort through masking difficulties or not) “pass” for being neurotypical to an outsider. Unfortunately in our society, if you are perceived as having a cognitive or developmental disability, you’re automatically seen as less than. Less capable, less competent, less worthy. So being able to mask your challenges to some degree, even for a short period of time, comes with a bit of privilege that not every autistic person has. That said, I’d like to tell you about a few times when I, as an autistic woman who frequently passes for being neurotypical, have what I call “your autism is showing” moments.

I am generally energetic and I like being around people. However, even being someone who enjoys staying busy, I usually need to spend some time alone decompressing after a long day. When I say “decompressing” I mean hiding in my closet alone with the lights off, in silence, with a blanket over my head for several hours. All this only to later emerge not feeling “refreshed,” but able to mostly tolerate what the remainder of the day has in store.

During times when I am unable to fully decompress, or am experiencing extreme negative emotions, I often lose the ability to articulate what I need, at the very least it can be incredibly inconvenient, at most it can be disabling. Much like when your cell phone, which is normally able to send and receive text messages, loses connection. The phone still works, it is capable of texting, but it has momentarily lost connection. Until the connection returns, communication will be extremely difficult.

To help avoid extreme negative emotions in particular situations, I’ll often use tools like noise-canceling headphones, fidgets, or even my service dog. Usually, anyone using these tools is quickly recognized as disabled and often treated differently by others. This could mean anything from increased personal space due to others keeping their distance from you, to rude stares and comments and occasional outright discrimination.

Those “your autism is showing” moments can occasionally serve as an unpleasant reminder for me to continue working on strategizing to minimize future meltdowns. They can also serve as a reminder to others in my life to allow me some space or alert them that I might need some extra support.

Since learning about my diagnosis in high school, I’ve had to really work at accepting and loving myself not in spite of those “your autism is showing” moments, but sometimes because of them. Autism is a part of me and affects both how I perceive and interact with the world around me.

I try not to let myself feel embarrassed or less than when my autism “shows.” I have sensory needs, I sometimes get overwhelmed by my strong emotions, I crave structure and organization, I flap my hands and I let out a happy squeak every now and then. Self-acceptance is a journey, not a destination.

I encourage others to investigate their own “autism showing” moments. Sometimes that can mean our brains/bodies are trying to communicate that we need an accommodation or more support with something. Sometimes it can be a signal to others that something isn’t working and a change needs to be made. But most of the time, it means we as autistic people are just trying to live our best lives like anyone else. We just have our own way of doing it, and we should be proud of that!