We often think of quality of life in the disability community as a disability centered topic. This isn’t necessarily the best outlook when it comes to determine what quality of life means for autistic people.
Quality of life isn’t a disability centered topic. There’s no scientific measurement that says this is what quality of life is for someone. There’s no scientific measurement that says this is what quality of life is for autistic people.
In the state of Indiana, we have the autism waiver. The autism waiver is advertised as being a person-centered program that aims to meet the individual needs of the client on the waiver.
I was on the autism waiver and the program was okay, but it wasn’t person-centered for me. It didn’t provide services I needed or valued for my life and that is okay, but it wasn’t person-centered, it was disability centered.
Somewhere along the lines a group of people sat down and designed the autism waiver for the state of Indiana. This group of people meant well and wanted to help autistic people. However, anytime there is money involved there are policies and, in my opinion, having policies that say this is how we can help someone, and this is how we can’t help someone can get in the way of us helping someone.
Imagine being someone coming to the emergency room in desperate need of care. Something terrible has happened and you need treatment to save your life. If there was some policy involved that prevented the medical staff at the hospital from treating, you for whatever condition was putting your life in danger you might die.
What if you were having a heart attack but the policy at the hospital stated the doctors could only treat your lungs. What would happen? Would you consider that person-centered treatment?
Some states in the United States still have autism waiver services that allow families to receive a budget that they can then spend freely on programs they feel will best meet their autistic child’s needs.
Most states do not allow a free budget anymore because somewhere along the line someone decided it was a bad idea to let families decide what to spend the money on so now the government is making all the decisions on what programs families of autistic people can spend the money on for them.
Imagine a person-centered treatment approach where the decisions on how to best help your autistic son or daughter were made by people sitting in an office somewhere that had never even met your child. How can they have any clue what is best for your child?
They are often coming at the approach of helping your child blind-sided having no idea how to best support an autistic person in life.
We also let insurance companies make important life decisions for autistic people because that is just how America works. An insurance claims person can be sitting in an office somewhere and call your doctor up and tell your doctor what your doctor can and cannot do to help your autistic child or adult.
The same is true of this insurance claims person as is true of the government with the autism waiver. It is a person sitting in an office somewhere that is making important life decisions for your autistic loved one. This cannot possibly be best practice for person-centered treatment that advocates for a good quality of life for anyone.
Quality of life isn’t a disability-centered idea. It is a person-centered idea. It is also not a group definition. We can’t sit here and say this is exactly what a good quality of life looks like for autistic people because quality of life is an individually defined term. What one person appreciates and loves about life may be entirely different than what another person appreciates and loves about life and that is one-hundred percent okay. We need to love and support each person on their journey to happiness and achieving a good quality of life.
Unfortunately, the world operates on limits and definitions. When providing government services or receiving services paid for by others such as insurance companies it is important to have a definition as to what services can be provided but we can never provide one true accurate definition for what quality of life means for autistic people. We also cannot do this for people who do not have autism because quality of life isn’t a group-centered or disability-centered approach. It is entirely individualized and person-centered.
It drives me crazy sometimes when my support staff tries to tell me that I should just be happy. They often tell me that I just need to just live and be happy with life the way it is. I get the impression they believe that autistic people shouldn’t have the same opportunity for happiness and quality of life as people without autism do.
I want to define my own happiness. People often say that we can’t allow others to create our happiness for us and we must create our own happiness, yet because of the way the system works I find that the government or insurance companies are often trying to define what my happiness should be and trying to create what they think good quality of life means for me.
Quality of life isn’t something we can measure by materialistic items or a true definition. In my opinion quality of life is measured by how happy a person is. There are many different things that might contribute to an autistic person’s happiness.
If we are truly going to advocate for a person-centered approach to treatment and deciding what true quality of life is for autistic people, then we simply need to talk to the autistic people and ask them how happy they are and find out what makes them happy.
We need to value autistic people’s opinions about their life instead of constantly trying to make important life decisions for them without taking into consideration their feelings.
Autistic people are some of the brightest people I know. They are very aware of what makes them happy. Even the most non-verbal autistic person who might have intellectual disability along with autism is in tune with their feelings and has an idea of what makes them happy.
We are often so busy making the decisions we feel are best for autistic people that we fail to take into consideration what autistic people might think is best for them.
Society often thinks they have great ideas for what makes autistic people happy but then we don’t run them by the autistic person before we try them, and we don’t take into consideration what might make an autistic person happy.
When I think of disability centered approaches to creating happiness and a good quality of life for autistic people, I think of all these autism non-profit organizations that have been born over the years.
Even the non-profit organizations have policies and procedures for how to support autistic people. They have policies and procedures for what they can and can’t do. Policies and procedures are great for running businesses, but they are horrible for helping people.
You cannot have a policy or procedure that defines what quality of life or happiness is for someone. It will fail every time because in order to really help someone be happy and develop a good quality of life we must adapt to that person and their needs.
This means that not only do we have to adapt to each person’s needs, but we also need to adapt to their changing needs and watch as their needs change each day.
If we are really talking about improving quality of life for autistic people, then we are talking about paying close attention to them and finding out what their daily needs are.
A disability-centered approach says these are what needs someone with that disability has and these will be their needs every day.
A disability centered approach doesn’t adapt to the changing environment and pick-up on the changing needs of autistic people. It doesn’t take into consideration how much anxiety or depression they are feeling.
If someone who is autistic is feeling more depressed on one day, then we need to adapt our person-centered approach in a way that treats their depression better.
If an autistic person if feeling more anxious one day, then we need to adapt our person-centered approach in a way that help them with their anxiety on that day.
Quality of life is measurable if you are willing to change the measure and definition of it each day. You cannot sit in an office somewhere and decide that this is exactly what quality of life is and this is how we are always going to measure it because it will always be different for each person and it will be different for that person each day.
When we attempt to define quality of life in an operational definition, we are placing limits on how happy someone can be. We are saying this is good enough. We are defining a point on a line in which we are comfortable saying that this is what your quality of life should be like and if it is here, we are comfortable with that.
What we are missing is that we could be here one day and then be somewhere else another day. If we reach that operational definition of what quality of life is for autistic people do, we just stop all our help and take away our love and support of autistic people simply because they have reached what we see as the operational definition of good quality of life?
Furthermore, we often attempt to define quality of life for autistic people. When it comes to deciding if an autistic person has reached that operational definition that we’ve decided is good quality of life I find that the person’s staff and sometimes their families are making those important decisions for them.
The staff and family are observing what they see from the outside. They think someone appears to be happy or appears to be functioning well enough to have a good quality of life according to this operational definition that we have made for them, but they haven’t even taken into consideration what the autistic person themselves feels.
The first thing we must do when assessing quality of life for autistic people is ask them what they think good quality of life means.
Even if we are going to have an operational definition of what quality of life is for autistic people it would be great if we could make sure that the autistic person fully understands what our operational definition is. The autistic person can’t make an informed decision as to if they have reached the operational definition of what good quality of life is if they don’t fully understand what the operational definition is or means.
It would be so much easier if as a person-centered approach we sat down with autistic people regularly and ask them to write a paragraph or two on what they think quality of life is. We need to ask autistic people what they think good quality of life is.
A mistake I’ve made in my past is thinking and believing that social skills are what good quality of life is.
When I was first diagnosed with Asperger Syndrome in 2007, I became obsessed with fixing myself and changing who I was, so I could fit into society better and make more friends.
This approach was very dangerous for me because it is never a good idea to mask your autism or hide it just to be accepted by other people. That is not a good definition of what good quality of life is.
Masking autism led to years and years of anxiety and depression for me. I don’t mask my autism anymore, but this is a new concept for me to embrace my autism and be who I am.
I still experience anxiety and depression, but I find that my levels of anxiety and depression are much lower when I’m not masking my autism. When my anxiety and depression levels are lower, I find that I live a better quality of life and am much happier.
Perhaps one of the best things we can do that would be easy and something we could employ immediately is to stop discouraging autistic people from being who they are.
We shouldn’t ask autistic people to always adapt to the world and change who they are in order to be accepted or fit into society.
We should focus on encouraging autistic people to be themselves and love their autism. We should love their autism for them and lead them to loving their own autism.
Loving ourselves is probably one of the first things to do when we look at quality of life. I’m not sure a person can ever achieve a good quality of life if we don’t love ourselves.
We could take all the materialistic things in the world and apply them to our lives but no matter how much money we have if we don’t love ourselves then we will always be miserable.
Loving the self is not easy and it is especially challenging for autistic people who are constantly being encouraged to change who we are and mask our autism.
The problem with masking our autism is that when we mask, and people are trying to create this operational definition of what good quality of life is they are looking at us in terms of our masking autism and deciding if that person masking their autism is having a good quality of life or not. They aren’t seeing the true autistic person who is not masking their autism, so they are making decisions about our quality of life based upon an act we are putting on in order to get by in society. They are basing that decision on if they think we have good quality of life based on the autistic person masking their autism and not based on the autistic person loving and embracing their autism.
When this happens, we end up getting an operational definition of what good quality of life is for an entirely different person and we aren’t getting the accurate picture as to what good quality of life is for the real person.
There are many challenges when it comes to defining good quality of life for autistic people but it’s also not as complicated or complex as people think.
Most autistic people can communicate in some way. Even those of us who are non-verbal have communication devices and most of us can communicate to you in certain ways.
The key is that society must be willing to listen to what autistic people say. More importantly, we must be willing to do more than just listen to what we say, we must be willing to value what we say.
Just listening to autistic people isn’t ensuring that we have a good quality of life. Valuing our opinions and showing us actions that show you value and care about what we say is one way of encouraging a more positive quality of life for us. How could a person autism or not be happy if we don’t feel like the people loving and supporting us value what we say and feel?
We must stop making decisions for autistic people without their input. Doing so is harmful and disrespectful for autistic people. Does someone make decisions about your life without your input?
We are encouraging the development of a positive self-esteem when we involve autistic people in their treatment plans and let them decide what treatment programs they would like to pursue.
Encouraging autistic people to make choices and decisions is a big step in helping them achieve a good quality of life. Making important choices and decisions is far more important than many social skills programs out there. In fact, being able to make important choices and decisions is probably the best social skill to have.
When it comes to my life, I want to be able to make decisions about it. I don’t want other people deciding what I can and can’t do. I don’t want other people deciding what makes me happy and what makes me happy. Lastly, I don’t what other people telling me what can make me happy and what can’t make me happy.
My experience with state services has been that they want to define what can make me happy and what can’t make me happy. I feel as if the state is making all the decisions for my life and I haven’t had any input into how I would like to live my life.
I have contributed many important ideas as to how my quality of life could be improved and people have listened or acted like they were listening, but they haven’t valued what I said. If the people making important decisions about my autism treatment valued my opinion and what I said about treatments I feel would help me best I would feel more whole as a person because I would feel like my opinion of myself was valued by the people who are supposed to support me.
Having no say in my treatment plan has led to a lot of anxiety and depression. It is important for me to pursue treatments I am interested in. Most importantly it is important for me to make the life decision as to what treatment I want to pursue.
We often tell autistic people that this is the treatment they are being offered and this is the treatment they must use.
When someone has a physical illness no one else makes the decision about our life or what treatments we can use for us.
We are given a whole list of treatment options and then we get to sit down and make the choice on our own what treatment we would like to pursue. Yet, we don’t afford autistic people this same opportunity when it comes to getting help with their autism.
Including an autistic person in our own treatment plans is an automatic boost I quality of life. People love to feel included in making important decisions about their life. Often, we discourage autistic people from making choices by accident and this ends up teaching us that we don’t always have a choice to make.
I spent a long time thinking I didn’t have a choice to be happy because the people making decisions about my treatment for autism didn’t include me in the decision-making process.
For years, I’ve had many ideas on how to improve my quality of life with autism but the government nor my staff wanted to include any of my ideas in my treatment plan.
When my ideas for improving my life were ignored, I developed a lot of anxiety and depression. My self-esteem and confidence suffered. I developed a belief that if the people who were hired to help me and the government didn’t believe I knew anything about autism or quality of life that other people I wanted to be friends with wouldn’t value my input in life.
By not including me in making important decisions about how to help me with autism I felt like I was not a real person. I wanted to be making important decisions about my life, but they weren’t letting me make decisions about my life.
In the state of Indiana people on the state’s autism waiver get exactly $16,500.00 per year to spend on services that can help improve their quality of life.
The only stipulation is the money must be spent how the government determines it best to be spent and the autistic person doesn’t have any input in how to spend that money to best improve their quality of life.
These are people from the state who have never met me trying to make decisions about how to best support me.
One of the best things we can do to encourage an improvement in quality of life for autistic people is to teach us how to self-advocate for ourselves.
One thing I’m good at is self-advocating. I admit that my self-advocacy isn’t always successful, but a good self-advocate never gives up and that is something I will never do.
It is important for me to contribute ideas on how to better support me in gaining independence and creating my happiness. I have been self-advocating for myself for years to get treatments I feel would benefit me the most. However, none of my ideas have ever been listened to.
I’m not sure what the problem is or what the big deal is because I’m not even asking for more funding. I’m asking to use the $16,500.00 per year that I already receive in a way that I feel has the greatest chance to impact the improvement of quality of life for me. I would much rather put that money to good use on improving my quality of life and get the best possible outcome I can as to see the money not be invested to its full potential.
But in a society that values policy and procedure the money must be spent according to how the state feels it is best spent. Here again we are running into a disability-centered approach that is not a person-centered approach and this could be hindering the self-development and quality of life for autistic people.
Autistic people need to self-advocate not only to be included in their treatment plans and ideas now, but we also must prepare them for when their parents are no longer here.
I have gathered that many parents’ biggest fear is what will happen to their child when they are no longer here.
I think it’s important that we teach the autistic person what it means to be a good self-advocate but also, we need to help them realize that they deserve to be treated with respect and have the same quality of life as their peers.
I spent a lot of years believing that I didn’t deserve to have the same quality of life as my peers because I was autistic.
It was a combination of things that led me to have such a low self-esteem about myself.
When I first found out about having Asperger’s I was crushed. I thought it was the end of the world because I had this disorder that prevented me from being social and making friends.
I thought I wanted to be this super social person, but it turns out I don’t really desire a lot of socialization. I desire to have a few close friends and a girlfriend but that’s it. I’m not a party animal.
It was that first initial belief that I developed that was negative about having a disability that lead to years of suffering for me. That led to me feeling like I was less than other people without disabilities and that was a dangerous belief that I created in my own head.
When my staff and the government didn’t care to value my opinions on what treatment would help me best that led to my self-esteem being weakened even further. If I’d had a more positive self-esteem going into treatment, I might not have let the way my staff and the government treated me regarding my opinions about what treatments I wanted to pursue, and thought would help me best affect me much.
It is also important that we help autistic people realize that they need to define their own quality of life. We don’t want them to think and believe that quality of life is how their peers define it.
I wanted to be like my peers. I wanted to do everything they did and be exactly like them for a long time. I desperately wanted to fit in and make friends and believed the only way to do so was to be like the people I thought were the coolest.
It turns out that I’m one of the coolest people I know. But here I was being all confused and defining quality of life based on what I saw in other people rather than me sitting down and defining what quality of life was for me.
I have learned that I should never compare myself to other people because I’m not like other people. What other people define as happiness I don’t and what I define as happiness they don’t.
What other people define as good quality of life I don’t, and what I define as good quality of life other people don’t. Happiness and quality of life are two person-centered things that can’t be defined by an operational definition.
We often think of quality of life in the disability community as a disability centered topic. This isn’t necessarily the best outlook when it comes to determine what quality of life means for autistic people.