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Acceptance is the greatest gift you can give a child with autism

It’s a scary thought, it truly is, but there are parents out there, far too many really, that simply can not accept that their child has Autism.

Either they’re in denial and refuse to believe the doctors, or they refuse to believe that their isn’t a cure to make their child how they want their child to be… or they just refuse to accept that their child is different… I feel so very bad for those children.

If you can’t accept me, who will?

A child’s only wish is to make their parents proud. To receive praise for those first steps, to get a treat for remembering to tidy up, for getting a shiny new bike for doing well in school… but when your parents see you as broken, defective…. less than you should be… what message does that send to a child?

Children grow up to be self confident because their parents instill that strong self worth in them. Children learn to be happy with themselves because their parents believe, through and through, that their child is wonderful exactly how they are.

Whether a parent tries to fake it or not is irrelevant because a child that can not be accepted by their parents will always feel they’re not wonderful, they’re not worthy of acceptance… that no one will ever like them for who they are.

Acceptance is not giving up

The biggest misconception is that accepting your child for who they are is the same thing as giving up and doing nothing to help them. That’s the furthest thing from the truth.

Only when you accept your child’s disorder can you begin to move forward in truly helping your child overcome, excel and maybe even turn that disorder into an advantage.

Many people who refuse to accept that their child has Autism will also refuse to start therapy, treatments and such… losing valuable time, if they ever do come around to accepting it all.

Also, acceptance in finally believing that your child is who they are, how they are and that they are simply always going to be different can help you to adjust your strategies and methods in that you recognize the need to incorporate your child’s wishes, behaviors, activities and “quirks” into the therapies/treatments that you’re trying to use.

Until you stop forcing change on your child and rather, accept the differences and work with your child’s differences, you will keep hitting road block after road block.

Therapy isn’t meant to make it so that your child is no longer autistic, it’s to help your child succeed with Autism, not despite it.

Acceptance leads to self respect, self confidence, self reliance

self acceptanceA child without his or her parent’s acceptance will grow up with self doubt, no self value and will always feel like they don’t belong… like they’re broken.

With acceptance though, a child can grow up to feel that they are respected and have real value to themselves and others. With confidence, children will feel more bold, more brave and more willing to take the steps necessary to becoming independent.

If you look at your child like they’re broken… they may never learn to brush their teeth. But if you love them for who they are (yes, including the fact that they have Autism) and begin to work with your child, with the Autism, you will find a way to have them brushing their teeth and you’ll find that way together, because you’ll work together to do it.

Acceptance is such a powerful thing… it’s far more than just believing the diagnosis… it’s empowering, it’s life skill building, it’s a source of pride, it’s a confidence booster, it’s enlightening….

Acceptance is not giving up. Acceptance is not saying something you don’t really believe.

Acceptance is a place. It’s a moment in time. It’s a destination that will set you on an entirely new path, a beautiful path. It’s the end of negativity and the beginning of limitless possibilities.

Acceptance is the door that you need to open… step through and close behind you.

Move forward with your child, not against your child.

Your child can be perfect. All you have to do is believe it. Because they are.

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Does person first language indicate a lack of acceptance?

I really had thought that I was done with the topic of “person first language”. I really had thought that I had said all that I had to say. But then last night, someone said something to me that brought me right back into it.

I tweeted this “People with Autism are not damaged nor defective. With your understanding, acceptance & guidance, their potential is unlimited.

This prompted one parent to respond in agreement but also added in this: “my son is not autistic he has autism

For some reason, this response kept me awake last night.

Do you truly accept your child?

I’ve never been met with person first language in agreement to understanding and acceptance of a child with Autism… somehow, it just really struck me as odd, like it was contradictory in some way.

All I kept thinking was, if you truly understand your child has Autism, if you truly accept that your child has Autism… you’d have no problem with saying that they are autistic.

What is acceptance?

acceptanceAcceptance is a funny thing, because it tends to mean different things to different people, or have different meanings in different situations.

For example, when my son was diagnosed with Autism, it took a little while for me to fully accept that diagnosis. I had to accept that he had a disorder, something that I couldn’t fix.

It wasn’t until much later that I had to accept that he had Autism. While it sounds like I had to accept the same thing twice, it’s very different.

I accepted the diagnosis the first time, but then later I had to accept the fact of life, the fact that his life was going to be different, that I’d have to parent him differently, that there would be very different struggles for me compared to other parents I know and more so, to accept that my child was going to be different.

I had to accept that Autism was a part of who he is. I had to accept.. that he was autistic.

While some people think they have accepted the same thing I have, they may actually be referring to one instance of acceptance while I am referring to another, even though we may both think we’re talking about the same thing.

The funny thing about perception

It occurred to me that when a person pushes “person first language” on others, it’s because they do not fully accept their child. Well, more to the point, they don’t accept the Autism that is within them. To them, the person and the Autism will always be two separate things. That the person can’t be autistic because that would be accepting that Autism is a part of who they are.

So I asked myself why that is… which lead me to think of it another way.

What if that person had natural born artistic ability. Would that parent refer to their child as “a child with art” rather than an artist?
What if that child had a natural born aptitude for math? Would the parent refer to their child as “a child with math skills” or a mathematician?
What if the child had a natural born ability to play music? Would the parent refer to the child as “a child with musical ability” or a musician?

Then it dawned on me… it’s because the parent would accept those skills… those “gifts”. Those are all clearly good things. There is no negative implications what so ever in regards to having those things be a part of who those children are.

But with Autism, there is a negative. There is a down side.

Nonetheless, Autism is still just as much a part of who that child is much like the art, math or music… in fact, I’d argue that Autism is more a part of who they are. Autism affects every aspect of a person’s life since, in reality, it affects all aspects of a person’s input, output and interpretation of the world around them.

But it’s often negative. It’s not often thought of as a gift.

And so, it’s not as easily accepted. It’s not as easily made into an adjective… like musician is.

We don’t see a child and his musical ability as being separate, even though playing music is just an ability.

Meanwhile we do see Autism as being a separate entity, as not being a part of them, because it’s a disorder. While in reality, this makes it more a part of who they are than any one ability does.

What about those with Autism that use person first language?

There are some people with Autism that use person first language because they hate how Autism has affected their life. They hate how difficult it has made things that every other person takes for granted. They hate how Autism has made them feel like an alien on their own planet.

I can understand that, I can sympathize. Still though, I think I could also argue that we have all felt that way at some point. Not to the same degree and not all of our lives, but at some point. Most likely when we were awkward, rebellious teenagers.

Anyway, the point is, while I can understand that feeling and the need to reject the cause of such heartache and struggles, I would also argue that at some point, that person could come to terms with their weaknesses, empower their strengths and move forward if they learn to love who they are, learn to love their unique perspectives and talents and learn to love every bit of themselves… including the Autism.

Many people hate who they are, this is especially true in autistics, but sometimes it only takes the right person, the right moment, the right miracle to cross your path to show you what there is to love about yourself.

I think that if that happens… when that happens… even a person with Autism can come to accept, and love, being autistic.

Does that mean that people shouldn’t use person first language?

Person first language does have it’s place. And of course, I understand a parent’s need to believe that their child is their child… not a label, not a diagnosis.

I also understand that acceptance is far more complicated than simple terminology.

While person first language will never go away, and is not always black and white, and does have it’s place (such as in legal documentation, schools, governments, etc)… I do still believe that it can be a very clear indicator about a person’s level of acceptance of that person.

While not a guarantee, because some parents truly do accept their child through and through, Autism and all… and still prefer to use person first language… I do feel that in most cases, it does show where they are on their path to true acceptance.

I would ask of those parents; if your child, at some point, shows a sudden aptitude for music, and it’s due to their Autism… would you refer to them as a musician? An autistic? or both?

Think about this…  have you ever noticed that no one has any problem with the term “Autistic Savant”?

Have you ever heard anyone insist on “Savant with Autism”?

When it’s a good thing, no one has a problem with it.

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If I had Autism

questionsAs I see parents writing articles on what Autism is, or how to describe it, I wonder how many of those people ever asked themselves what it would be like if they had Autism themselves.

Have you thought about it?

I have.

These are just some of the questions I asked myself:

  • Would I see the sounds I hear?
  • Would it be beautiful? Would it be painful?
  • Would I feel the ridges of my finger prints when I rub my hands together?
  • Would I feel anything at all?
  • Would people expect me to have special skills?
  • Would people expect me to have no skills at all?
  • Would I speak the same language as everyone yet still not understand anyone?
  • Would I be unable to speak any language but understand everyone perfectly well?
  • Would I require constant control over myself and my environment?
  • Would I lose control easily?
  • Would I really need hugs?
  • Would I really not want to be hugged?
  • Would I notice the flicker of a fluorescent light?
  • Would I not notice the dangers all around me?
  • Will I be loved for who I am?
  • Will I be hated for who I’m not?

Even though some of these pairs seem like opposites from each other, would I still answer yes to both? Would my answers change from day to day?

Would I be able to explain these things to other people? Would I want to?

Would I be me? Would I be less than me? Would I be more?

There’s so many more questions…. I quickly find myself becoming overwhelmed by it all but strangely, as much as I’ve thought about this a lot, it never really hit me like this until I asked myself…

If I had Autism…

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The life of an autism parent advocate

In one way or another, all parents that have a child with Autism will become an advocate… whether they are just explaining to fellow family members why their child behaves how they do, or if it’s fighting for their rights in schools and other services or if it’s speaking out to the world on behalf of all people with Autism… we all come from the same place, we all do our best with the best of intentions.

In some ways, it sounds glamorous… putting up the good fight, speaking to the hearts of others… but at the same time, it sounds like quite the struggle. A constant, tireless battle requiring a love filled heart surrounded by a skin of steel.

I can’t speak for everyone, only myself, but one could imagine that the stories of most people aren’t far off from what I’m about to tell you.

What you already know

If you’re reading this, you’re likely a parent. Which means you already know all about the cost of parenthood, the constant running around, the constant illnesses, the constant battles at bed time and so on and so forth.

This includes the unexplained rashes, heart break over bullying and more.

What you might not know

With Autism comes a host of other issues, including no sleep, irregular diets, regular therapy appointments, battling the education system, having to fight with the government for coverage and assistance and a whole lot more.

Bullying is far more likely as well as far more frequent. Friendships are far less likely and less frequent.

Regular clothing can be painful, bike riding can take 2 to 3 times longer to learn, special equipment may be needed such as trampolines or Lycra(stretchable) bags or bedding. Some children even need weighted vests.

The diets aren’t just stressful to keep on top of, but in some cases can be quite costly. For example, I can buy a loaf of bread for $1.80 at the store…. or I can buy a loaf of gluten free bread for my son for around $8. A small bag of gluten free pretzels, containing about 12 pretzels, costs $5.

The cost of success

So it turns out that I’ve been doing rather well at being an Autism Advocate…  but the question is, what does “doing rather well” mean?

Well, no parent becomes an advocate for the paycheck.

I have been asked by several blogs, even charities, to write for them. I’ve done several radio interviews, been in the paper a few times, even had CNN call me once. I have almost 10k followers/fans/circles across the various social networks and I get between 5 and 10 emails a day with questions or just to share their story.

All in all, I call that a success and am quite proud. However, there is an inherent problem with all of this.

As it adds up, I find myself spending 1-3 hours a day on Autism advocacy… that’s my own personal time.

When you consider that I have a 9-5 job just like everyone else, plus a family of 4 which I love to spend my time with and then various other responsibilities and commitments…  let’s just say that the 24 hour day gets used up pretty quick.

On top of that, as I said earlier, therapy, diets, special supplies and more really begin to add up when being a parent tends to cost a small fortune as it is.

The cost of success being an Autism parent advocate is that you get less hours, more bills and even greater stress.

It’s not a thankless job

The one saving grace is that it’s not a thankless job. I often hear from others how grateful they are and for that, I myself, am grateful. If money wasn’t a problem, that’s all I’d ever need. A thank you means everything to me.

Welcome to the crossroads. That’s where I am now. I love being an Autism advocate. I love hearing from people… their good stories, bad stories… I love writing the articles, reading articles from others…

The problem is, I simply can’t keep devoting hours of each day while the bills pile up and begin to fall behind.

I come across twitter account after twitter account, facebook fan page after facebook fan page… inactive. And I can’t help but wonder if they ran into the same crossroads. Did they lose interest? Or did they find that they simply couldn’t commit to it any longer?

Autism advocacy: it is glamorous, it is a struggle… it is all those things to different people.

The good news is that the numbers keep growing. Awareness keeps increasing. With every person that has to hang up their hat to focus on their family, there’s another 2 people there to take their place.

No matter what. Stay strong. Stay positive. And remember, support is where you give it.

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When Autistics Write About Autism

There’s a very unfortunate bit of irony happening within the Autism community that is far more disappointing than ironic… we encourage Autistics to speak up and to not be afraid to say what is on their mind but then when they do, we attack them for not saying what we want to hear.

This has happened quite a few times over the years but even more so in the last week as autism.about.com had a series where adults with Autism were asked to submit a piece about themselves and what they stand for.

Repeatedly, these people would put themselves out there only to be met with some scathing comments from people. Several people have written about this as it really does have a big impact on the Autism community… and here’s why:

Autism Introverts

Autism itself is defined as a social and communication impairment which means that speaking out about something probably doesn’t come very easily. We encourage our children as well as all people with Autism to speak up.. especially about Autism.

Only an Autistic can describe what it’s like, how it affects them. We parents can give secondary accounts, how it affects us and how we perceive it affects our children but when it comes to first hand accounts, we need Autistics to break through their shell.

More so than that, we just want people to be who they are. Autistic or not, don’t be afraid to say what you have to say. Being who you are is one thing that only you can do. But many Autistics are either afraid, uncomfortable or just simply not interested in putting themselves out there.

As a result, Autistics make the best Autism Advocates but because of the nature of Autism itself, it also makes them the worst advocates.

arguingDisagreeing is hard to do

In society, not just the Autism community, it’s not uncommon to see people attack others that they disagree with.

On the internet, people don’t have to look you in the eye to say something hurtful. That makes it a lot easier. You don’t have to deal with their unease, their obvious fear, their expressions… you can just say the most hurtful thing you can think of and leave.

This happens far too often and it’s not just limited to hot topics like religion or politics. It happens far too often in the Autism community as well and not just between parents.

I’ve seen Autistics write about themselves, how proud they are of themselves. Often they write about how they advocate on the higher functioning end of the spectrum only to be attacked by parents that have children on the lower functioning end of the spectrum because they didn’t say what they wanted to hear. The parent disagrees so adamantly that they attack the Autistic person because what they say doesn’t mesh with the parent’s experiences.

It happens with many other topics as well… sometimes they get attacked for the most simple things too, seemingly random things. They can just be positive and be attacked for it, or negative and attacked for it. There’s no rhyme or reason. Nothing is safe.

On the surface, it appears that simply stating “I disagree with what you’re saying because” has become impossible to do, instead becoming a verbal attack of some kind on their intelligence, their logic or some other personal aspect of their being.

No Free Pass for Autistics

All of this is not to say that Autistics can just say or do anything they want without judgement. Autistics still have to abide by the same code of ethics, etiquette and behaviors as the rest of us. Autistics can’t just make their own attacks on people or be rude and not expect some backlash.

If we are to be fair and wish for equality in acceptance, then those that behave poorly should expect some anger in response.

Not all situations are uncalled for… in some cases, an Autistic will be rude or do things that are simply unacceptable and the response from the people is not entirely unexpected. Perhaps some would call it over board but certainly not unexpected.

I Am So Disappointed

In most cases, I am simply disappointed. I’m not sure I can put it any other way than disappointed.

Many times people say things I disagree with and most often times, I don’t say anything. If it’s blatantly wrong however, I may speak up but I’m always careful to be respectful. I don’t know those people, I don’t know what drew them to their conclusions.

I respectfully disagree and state what I think and why. It’s always been my experience that this is the proper way of civil discourse.

What I see most of the time, however, is people calling each other idiots (or other derogatory names) and question their intelligence, or upbringing or something along those lines. Usually they state what they think and don’t even provide a reason for it… they just make their attack, their stance and that’s it. Giving people no recourse but to attack back since there’s very little to either understand or make a case against in rebuttle.

It is so very hard to take something you’re passionate about and disagree with someone respectfully. It’s even more difficult to be civil with someone that so strongly contradicts your beliefs.

But it’s not impossible.

Acceptance… We’re Not Ready

I really want for society to be more understanding… I really want for people to be more accepting of the differences in people, especially when Autism is involved.

But I think it is very clear that we’re just not ready…. as a society, we’re simply not there yet.

Until we can put aside our own hatred, our own anger, we can’t expect those that don’t understand Autism to do it.

We encourage Autistics to come out of their shell, to speak up despite their anxiety and fear and then, when they say something we disagree with, we immediately lash out and bully them back into their shell.

We do this to our own community, we do this to our own children… and yet we expect others to be more respectful?

There is something fundamentally wrong and I am so very disappointed by it.

The Autistic Me has a great post about all of this, some others have discussed it on Facebook and Twitter and in response, Lisa from Autism.About.com has since taken down the 2 most recent posts that were written by adults with Autism.

If it was your child

My advice is, when you see a post by a person with Autism, imagine that person is your child. Imagine you’ve encouraged you child for many many years to speak up and to be brave… to not worry about what people say and just share who they are with the world because who they are is beautiful.

If you and everyone could do this, the responses would be vastly different. Even if you disagree, you’d respond with respect.

Disagreements do not need to be charged with anger or hatred. Disagreements can be made without assumptions of the person. Disagreements can be made without attacking the person.

If that was your child that spoke up proudly, you might still disagree but you’d disagree in a very different manner.

If you are an Autism Advocate, then perhaps you should consider that all people with Autism are your children. For we speak for all, not just our own children. And we encourage all, not just our own children.

Don’t be so quick to hate. Don’t be so quick to assume a person’s history or intelligence level just because you disagree with them.

Speaking out is hard. Be proud… even if you disagree. Be respectful, even if you disagree.

If you won’t… how can you expect others will?

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