An Aspie's Life: The Untold and Unknown Story

Chapter 5 - Communicating with Family

Chapter 5

Communicating with Family

Talking with your family seems like it’d be the easiest thing in the world. But some problems can arise.

Since Asperger’s Syndrome is something most believe is passed down through family members, then a mother, father, grandparents, or even aunts, uncles, and cousins may also have it to some degree.

While this can be a means of having family members that understand, it can also be more difficult if they are undiagnosed. A level of patience, understanding, and confidence has to be held onto when you are thinking of either disclosing your own diagnosis or of talking to a family member about seeing about the possibility for them to be tested.

Let’s start with disclosing your disability to your family.

Whether or not you still live at home with your parents, all Aspies are simply not the same. Each carried their own set of problems they will have to deal with in their own way.

Reading book about Asperger’s Syndrome, even books like this one won’t ever cover the full picture.

Talking about how you feel and think with your family is a hard step to take. In the early days, you might even be afraid to because you don’t know how to explain it. The best idea is to start as early as possible. As soon as you know what is true for you as an Aspie, let them know.

I was diagnosed late in my life so figuring out what was just me and what was the Asperger’s Syndrome was hard to determine. Even as I figured things out, I had another problem to deal with.

My parents had done the best job raising me that they could when I didn’t know I was an Aspie. Now that I was one and things had to change, it became much harder on them. Imagine spending 20 years acting one way toward someone only to have someone tell you that now things were different and you’d have to change the way you acted toward that person. It’s a lot for anyone to digest.

This is why staring sooner, rather than late, is your best bet to make the transition as smooth and painless as possible. Do so with those family members you spend the most time with is the first and most important stop. Be warned that this steps, while important, is the most difficult when discussing your disability.

Once you’ve communicated with those close family members then this becomes the time when you can find out how to deal with the rest of your family. This is another place a decision has to be made. Either you can tell them lout right, enlist the help of your friends and close family members to, on your behalf, discuss your “oddities” in a way that let’s them know it’s just natural, or you don’t have to tell them at all.

This decision is completely up to each individual person. If you aren’t an Aspie but someone you know is, this decision needs to come from them personally. What ever decision they make should be final unless they change their minds. This is crucial to allowing an Aspie to feel they have control over their life. I’ll cover the decision making process later.

After you’ve disclosed your Asperger’s Syndrome to your family, patience must be applied. Why patience? As an Aspie, you learn that it will take time to learn the steps you must take on a daily basis to cope. That alone will require your own patience as well as those around you. Once you are able to and reveal this side of yourself, they will also need an adjustment period. It’s hard having to see something or someone in a different light.

Now, the worry comes in about it everyone will look at you as just different or less because things not have a name attached to them. This is where having close family and friends to help explain that while the way thing work might have to change that you are still you. That you are different in the way you talk and act but you aren’t less of a person. There are still things you’ll be able to do and comprehend that others never will.

Right along with patience, understanding must follow. While you may have a long road ahead of you, you’re family has one just as long. Sometimes they will fall back into old habits. Other times they will have a bad day of their own and forget themselves. It may upset you and it may not, however, you have to give them time for it all to sink in. Change comes slowly so give it room to breathe and everything will work out just fine. Once this hurdle is covered, you’ve made a large step in gaining the necessary confidence you’ll need to keep your path straight.

I consider myself very lucky in this aspect. While I’ve never had a chance to move out and be on my own, save for college, I did have both of my parents close by me. They were there from the beginning to help with the process.

My mom was the one who went with me in the beginning. When the results were ready, both my parents sat in to hear what the doctor had to say.

Not all situations will be like this one.

Yet, this is where I will inject a very important thing about your future diagnosis, should you be reading this to determine that for you. Do not self-diagnose.

This means if you think it is possible you have Asperger’s Syndromes, don’t let a book or someone other that a doctor decide it for you. Talk to an Autism group and they can help guide you to the doctors that can fully assess your situation and let you know for sure.

They can also help you take the net steps to coping with this new aspect of your life. For some, little to no extra help will be required. For others, meeting with counselors, Autism groups, and therapists along with medication and/or other items like tinted lenses will be of the upmost importance.

The problem with self-diagnosing is that instead of seeking help, a person tends to use just things they read on the internet or in a book. Those mediums can’t teach you everything a possible Aspie needs to know. This leaves the “treatment” completely up to that person and what family or friends they have around.

Secondly, should that case of Asperger’s Syndrome be something that prevents them form working or simply functioning on a day to day basis, there won’t be anyone that can help them. Sure, there are support groups for this disability but without a diagnosis they can’t even apply for things like SSDI. Even support groups need to know and only a true diagnosis can determine what the Syndrome is and what is just their personality.

So getting a true diagnosis is important for not only the person but for their family. That’s the best way to explain to whomever about what is needed to function on a day to day basis.

One last thing.

Even if you have friends or family there from the beginning, things will be tough. While giving them time is key like I’ve mentioned. They will be understanding but know it’s not going to come fast or easy.

My symptoms started five years ago, maybe more but because of the path of my life it’s hard to determine. While we pretty much knew five years ago that I had it and got my diagnosis, my parents still have trouble with the way they act and talk to me. I still have days that I have to hide out in my room and cry because of something they said or did. There are days I don’t even feel like getting out of bed and dealing with the world.

Other days, though, everything falls into place. There are no words said or actions performed that send me spiraling down. Some days I’m happy and I can get things done.

While I’m an Aspie, I think this is as close to being bipolar as I’ll ever get. The only up side is that it usually takes a stressful situation to bring me down into something like my personal brand of depression.

Be aware that whether you are at the top, middle, or bottom of the Asperger range that each day is going to bring a new challenge to the table. Facing changes is hard especially if you’ve let all the people around you know and things don’t seem to change.

Disclosing the disability is only the first step. The next step is fighting everyday to live you live to the best of your ability.