Siblings and Autism: A Mother’s Perspective

I have been thinking about doing this post for a while. When you think about having children, the first thing that comes to your mind is joy, not difficulty. The truth of the matter is, when you have children there will be difficulty: and it comes in all forms. I had all the normal difficulties raising children, however I had the added task of raising a child with autism and doing my best to make sure my other two children had what they needed. This was not always easy to do.

A child’s autism diagnosis affects every member of the family in different ways. Parents/caregivers must now place their primary focus on helping their child with ASD, which may put stress on their other children.

My son Steven, who has a diagnosis of autism, is now 28. He has a brother named Patrick (26), and a sister named Krista (22). Being a sibling to a brother with autism has not always been easy for the two of them. There have been many trials along the way and being honest I will never know how it was for them. I was Steven’s mother, and came from a different perspective. They had to sacrifice and be the “older sibling” many times.

A little about Patrick: From the beginning, he was the sweetest little human being. He went to all of Stevens therapy, doctor’s appointments and while at home he took part in all the therapy- related activities I did with Steven daily. I always was honest with Patrick about Stevens autism and answered any questions he would have. He was a huge supporter for Steven, and never one time complained about all we had to do to help him. Many times, he was the “older brother” and took on a nurturing role early on. The one thing Patrick did from the beginning, is treat Steven just like he would have if autism was not involved. Patrick always included Steven in everything he did. They had a love of video games–a little too much love–and enjoyed playing outside together just about every day. Steven, to this day, has such a love for his brother and they are both so lucky to have each other. Patrick now is a successful software engineer and has moved away for work. We visited him not too long ago, and he made us all a special dinner. Steven had his favorite meal made by his brother: a cheeseburger. Looking back, I wish I would have encouraged Patrick to do more for himself and spend more time with his friends. He is a great young man with a generous heart, and while I made many mistakes, I also know I did things right. Today, he and Steven have a loving relationship and I could not be more thankful about that.

A little about Krista: OK so no one prepared me for having a daughter! This girl came in to the world loud and filled with drama. She was the boss from the beginning. Having two older brothers did not phase her in the least. From early on, she told them what to do, and they did it! She demanded a lot of attention as a baby, and I was worried I would not be able to meet Steven and Patrick’s needs. I did the best I could, and as she grew, I was able to manage things a little better. It is a tough job, raising three children; especially when one has special needs. Krista never really asked many questions, but we still told her what she needed to know. She too went to therapy, doctor’s appointments, and was also a part of at home activities. Steven and Krista have had a very interesting relationship and at times was not that great. I think a lot of it was the age difference, but having a brother with autism can be tough. She is almost finished with college and will be an elementary school teacher. I could not be more proud of her. Today, Steven loves spending time with her, and she is the best sister he could ever ask for. Miracles happen!

Patrick and Krista have have had a very close relationship with each other. I believe this to be important because they have had each other to lean on and confide in. No one but the two of them can understand their bond and what they grew up feeling. 

Steven has gone through some very difficult times. Since we are a close family, that means we went through those times with him. When things were difficult I tried my best to make sure Patrick and Krista were not affected. The truth is, this was their brother and it was very hard on them. I did my best to guide my children everyday and nurtured their relationship with each other to the best of my ability.

I have been asked by parents often how they explain autism to their other children. You simply say your brother/ sister has autism and we need to do everything we can to help them. Talk about autism early on, often and adjust your information as your children grow.  Give your children permission to ask questions about autism and let them tell you what they think about it. This can lay the foundation for future conversations.

Listen to their concerns and fears. Siblings may feel uncomfortable with behaviors exhibited by their sibling with autism. I know in our family, when Steven would throw uncontrollable tantrums, this was very scary for my other children. They thought he might hurt them or my husband and me. The key is to listen to them and make sure they know they are safe and things will get better.

The most important thing is make sure they know they are loved equally, even though their sibling will take more of your time: this is just how it will be. Set aside personal, one-on-one time with your other children. I tried to spend special time with Patrick and Krista, even though it was not always easy. I was exhausted often and some days I just went through the motions. Many days I am sure I did not meet their needs. I have had to forgive myself for this because I truly was doing the best I could.

While not all siblings will have stress related issues, some do. These published by the Autism Society are some of the best ones I have seen and several have been true in our family.

  • Embarrassment around peers; jealousy regarding amount of time parents spend with their brother/sister
  • Frustration over not being able to engage or get a response from their brother/sister
  • Being the target of aggressive behaviors
  • Trying to make up for the deficits of their brother/sister
  • Concern regarding their parents’ stress and grief
  • Concern over their role in future care-giving as they get older 

These are not something we need to consume ourselves with worry over, it is just a good idea to be aware that stress related issues can arise.

These days, there are new challenges and concerns. Being the brother or sister of a person with autism does not end with childhood. I know for a fact Patrick and Krista have concerns about what will happen with Steven when he no longer has a mom and dad around. This is hard, but something we all have to think about. I have the same concerns as they do.

My hope is that I have raised children that will look after their brother when my husband and I are gone. I never want them to feel as though Steven is a burden. However, I want them to make sure his needs are met, he is loved, happy and well looked after. I feel confident that, between the two of them, they will honor our hopes and that Steven will be OK in this life. Even without parents.

I would not be doing anyone a favor by skipping the most important part: all the good that comes from having a sibling with autism. Having Steven as a brother has taught Patrick and Krista invaluable things. He has helped to shape them into the adults they are today by teaching them, not to judge someone by the way the look or act, patience and understanding, unconditional love and acceptance just to name a few. Above all, he has shown them that nothing is impossible! They are both better human beings because of Stevens’ influence. 

Siblings who have a brother or sister with autism are angels among us. They are a special kind of child/adult that loves in a way that only they can. They make this world a better place just by being in it. We could all learn from them in many ways and my hope is that blessings follow them all the days of their life. They deserve that!

This post is my point of view, but I hope in the future to have one that comes directly from Patrick and Krista. They are both busy, but I am sure they would love to give their perspective of having a sibling with autism.

Until next time,


The Challenges of Raising a Child with Autism and Working

Many people do not know the difficulties of raising a child with autism and trying to work at the same time. Autistic children require constant care, and the financial impact on families is enormous.

Findings, published in Jama Pediatrics, report that the lifetime cost for an individual on the autism spectrum is $1.4 million. If there is also an intellectual disability, the total rises to $2.4 million.

According to a study published in the journal Pediatrics, mothers of children with an autism spectrum disorder earned 56% less money than mothers of children with no diagnosed health issue. Finding the right career and an understanding employer is essential!

Parents are often faced with having to reduce work hours or leave their job altogether, if they are the primary caregiver, so they can meet their child’s needs. It is difficult enough in a 2 parent home, however, the impact of this if you are a single parent is almost an impossible task to take on.

Given the substantial health care expenses associated with autism–along with lower income if only one parent is able to work–presents a financial burden for families. It goes without saying that the government and healthcare industries are not caught up with being able to substantially help the autism community. As parents, we are left to figure out how to help our child make progress, pay our bills, and provide for our other children, if we have them.

We all know that early intervention is the number one thing that helps our children with autism make the most progress. Most of these interventions come with a hefty price attached. One such example is Applied Behavioral Analysis (ABA) interventions. This is a proven method to help children with autism. The cost of this therapy is estimated around $46,000 – 47,000 per year. Some parents–myself included–are forced to learn this therapy themselves, so their children do not miss out on a much needed therapy. Along with ABA, some other added costs are prescription drugs, physical and occupational therapy and other therapies that will improve social and physical function.

You might think that insurance companies pay for all of these, but that is not the case. The truth is, autism-specific therapies–such as ABA, feeding therapies, developmental therapies, or even sensory integration therapies–are less likely to be covered. Most parents will tell you, if these therapies are covered, it is usually a battle to get them approved.

When a child has autism, you never know when or if a crisis for them will come up. They can develop new alarming symptoms, which require immediate medical testing. They can also have severe meltdowns with aggression, where they can’t leave the house. The list of what can happen is never ending. This takes such a mental, physical and financial toll on the parents, which is why we need all the support we can get. Many times, if a child becomes violent, it takes more than one person to help them. This is one example where both parents need to be involved. It is not a given that there are extended family members are around to help.

When our son Steven became a teenager, he had a major crisis. He started exhibiting very strange behaviors that were repetitive–such as pacing back and forth–and could do nothing else all day long. He was also having meltdowns, that would sometimes be violent, for hours. My husband and I had no idea how to help him, and neither did his doctors or therapists. He was forced to be home bound, and my husband and I were left to figure out how we could both help Steven and keep our jobs! Our entire family was falling apart and the devastation it was having on my other children is not even something I could put into words. Steven had been doing so well until this point, and these new symptoms seemed like they happened overnight. 

The task of trying to help Steven was enormous; but his quality of life and well-being were in serious trouble, as was our entire family’s. After months of doctor visits, we finally decided we needed to take Steven out of state, to see a specialist. Once we had a new team of doctors in place, Steven was diagnosed with having Tourette’s Syndrome and severe OCD. As if Autism and Apraxia of Speech were not enough. Thankfully, he had great care and they were able to slowly help him get back on track. However, my husband and I had to navigate our jobs the entire time all of this was happening. 

Once Stevens symptoms straightened out-which did not happen overnight, our lives went somewhat back to normal. Our family was so happy Steven was getting back to his old self. We did not take any of it for granted, and we were thankful for every good day. 

During this time my employer was kind and understanding, but they did not have the money to give me an extended amount of paid leave. So, I had no choice but to stay home: and not get paid. There were so many days that I could not deal with Steven by myself, and needed the help of my husband. He had sick time and emergency family leave, but even that was limited. He had to take off a lot of days, and we were concerned about the security of his job.

Neither one of us were at a job with any kind of decent policy to protect us in case of an autism related issue. What’s even more shocking, is my husband worked for a city where other employees had children with autism. Why should these workplace policies exist? We have an autism epidemic in this country, and it is time that all employers get on board to help hardworking families during their times of need.

The events that took place for our family really opened my eyes to the lack of knowledge that employers have of what it takes if you are the parent of a child with special needs. When you are raising a child with autism, working full time becomes difficult, if not impossible, for both parents. It is essential to design workplace policies that recognize the full impact of autism. Ones that provide flexibility, plenty of paid time off and job security: especially in the case of a crisis with your child. There also needs to be the option of health care coverage through employers, for our adult children with autism, that does not have an age cap.

Since my son Steven is now 28 and has aged out of school, I have not been able to have a full time job. I am not comfortable leaving him for 8 hours a day alone, and he also still has needs to be met. I should never have to choose between helping my child and working to help my family financially. I can do both, given the right flexibility and I don’t think that is a lot to ask. I also think employers are missing out on great employees, by not hiring highly motivated people that want to work. When I try and apply for a job that says they will be “flexible,” it is never true. It usually never includes working from home and the days and hours are non-negotiable, for the most part. That is not flexible!

Unfortunately, many employers do not understand our challenges, and do not provide flexibility for parents/primary caregivers of children with special needs. We must educate employers on the needs of families dealing with autism, to allow for such changes. It is important to know your rights as an employee, to help navigate taking leave or increased flexibility in your job. While we have programs-such as The Family And Medical Leave Act and others-they have restrictions and eligibility requirements. These programs also become more difficult to access when your child is over the age of 18: autism does not end at 18!

There also needs to be better State/Federal laws put into place that allows for more paid leave, and does not allow for any discrimination against an employee that requests time off to care for their child with a disability. These policies need to include adult children.

Family-friendly policies benefit employers, families, and society.

I have heard from a few parents that have supportive employers, ones that are doing what they can to make family friendly policy changes in their workplace.  Thank you to those employers that care about the work-life balance. You are leading by example and those who work for you are very fortunate.

Despite the difficulty in trying to find a career, I continue to be on the lookout for a job that allows me to meet Steven’s needs, and help my family financially. There is a job perfect for me out there somewhere: and I will not give up until I find it.

Thanks for taking the time to read about this important topic. I would love it if you would like and share this post, so we can get the word out there. My hope is if we spread the word of our difficulties, more employers will listen and progress will be made. You never know who is listening.

Until Next time,


Hello All,

I wanted to share an educational resource that I thought my readers would really enjoy: Their mission is to Nurture each child’s passion, curiosity, optimism, and educational success.

This is a great website with teaching tools for parents, teachers and therapists.

We all know early intervention is the key when helping a child with autism. It’s always so nice to have new educational resources for that intervention.

They have allowed me to include one of their worksheets and answer keys for free, so you can have your child/student give it a try.

The weather is perfect for a backyard bug hunt before completing this fun crawlies maze! Be sure to check out more early math activities at! You can also follow them on social media @education_com on Pinterest and Twitter.



Here are some additional worksheets they have to choose from:

  • Maze
  • Word search
  • Word search with images
  • Crossword puzzle
  • Word scramble
  • Addition
  • Subtraction
  • Division
  • Multiplication
  • Spelling Test
  • Matching words to images
  • Word Tracer

They also have a variety of themes to choose from. Right now their seasonal themes are popular: Valentine’s Day, snowman, and mittens. Their other themes include crawly bugs, school days, dinosaurs, outer space, and more so check them out when you get a chance.

Please feel free to share this post. Enjoy!

Until next time…



Kelly’s Top 8 Autism Myths and Truths

Over the years, I have gotten so irritated by people labeling individuals with autism as being identical. Nothing could be further from the truth! I have posted my top 8 frustrating myths–not in any order, they all irritate me equally–that have all been said over the years. I chose 8 myths because that just sounded like a good number 🙂

Myth #1. If your child has lack of eye contact, they have autism.

Truth: Many children who lack eye contact are not autistic. Some children just feel awkward making eye contact, some may have anxiety: lack of eye contact is not an autism diagnosis.

Additionally, children and adults with autism can be overstimulated by making eye contact, which is why they may avoid it. However, it can be greatly improved with practice during therapy. 

Myth #2. Autistic people are all alike.

Truth: They might have the similar social communication issues, but they differ greatly from each other. Some have similar characteristics, though they each have their own unique personality. The expression “when you’ve met one person with autism, you’ve met one person with autism,” is accurate. Don’t judge a book by its diagnosis!

Myth #3. Everyone that has autism is like “Rain Man.”

Truth: In the movie Rain Man, the character was an autistic savant. In reality, less than 10% of the autism population have savant skills. A person’s capabilities are not an indication of the capabilities another person with autism possesses. In fact, most have average to less than average skill sets. Full disclosure here, my son Steven does have Savant skills. This fascinates people, although it has not been helpful in securing any type of job for him, which is also a misconception.

Myth #4. Those with autism can usually only work in a grocery store or do jobs with repetitive tasks.

Truth: This one hits close to home, and makes me angry. I think it is fantastic for those with autism that work at a grocery store, or have jobs with repetitive tasks. However, not everyone with autism wants to do this. They can also work in offices, libraries, for big corporations, mail-rooms, etc. Let’s not put them in a specific job just because of a diagnosis they were given. Why should we limit what such a large population is capable of achieving? Let’s learn about the individual’s strengths and then decide what they should do for a job. Give them a chance to show how they can learn new skills.

Myth #5 People with autism do not show affection or have feelings.

Truth: Although they may be sensitive to touch, they can show affection. They are loving, caring and always are ready to give hugs if you want one. Some just need a little more encouragement than others. There was an interview of an autistic man who spoke about emotions. He explained that he could feel absolutely every emotion: he just had a difficult time expressing each emotion that he felt. He also expressed that he was saddened by many who assume he did not know what emotions were. Many times, I have seen my son Steven with tears streaming down his face, because something has upset him: that is emotion. I have also heard him pray for many people who he thinks are suffering, which is love and compassion. Just because someone can not communicate like everyone else, does not mean they do not feel.

A son’s love for his mom

Myth #6 Autism is caused by bad parenting (cold mother syndrome)

Truth: When my son Steven was diagnosed, every time I read something about autism, someone mentioned this ridiculous idea. For years I thought it was something I did that caused his autism. We have to stop trying to make parents feel like they did something wrong. Genetics or environmental factors may cause autism, or possibly something went wrong at the time of conception. The one thing it is not caused by, bad parenting and let no one ever tell you anything different.

Myth #7 Those with Autism cannot adapt to change.

Truth: OK, so I admit almost everyone I have met with autism does not like change. This does not mean that they cannot improve in this area. It is possible to have autism and grow up to be fine with change. To this day, even though Steven is 28, people still assume he can not adapt to change. It is one of the first questions I get asked about him-this includes professionals that see him. They can adapt to change! Though, much like everyone else, that does not mean they will always be all right with the change. For instance, one time last year, Steven was upset we had to miss a movie because his sister got into a car accident -thank God she was fine. He wanted to see that movie however; he showed he could adapt by caring about the well-being of his sister by saying we would just see the movie another day. It is possible they can adapt to change and it’s called progress!

Myth #8 Autism can be cured.

Truth:  I realize this is very controversial, and not everyone will agree with me: which is OK.  In my opinion there is no cure for autism. My son Steven is 28, and I have met dozens of children with autism that all grew up to be adults with autism. I have even met a few young adults that were “recovered” and they still had characteristics of autism.

Having said that, there is so much hope and progress to be made! Children with autism grow up, and along the way they will make enormous progress that will help them lead wonderful lives. There is no such thing in this world as perfect, and we need to stop pretending that there is. I have always been honest by saying I wish my son did not have Autism. Seeing him struggle has sometimes been more than I can bare however, Steven is the child I was supposed to have and what a blessing he has been.

The bottom line to debunking all of these myths is this: a person with autism is an individual. While some show the same characteristics, they are not all alike. They all have their own strengths and weaknesses, just like everyone else. We all need to stop labeling them as one because nothing could be further from the truth.

I used to get so mad that anyone would judge my son Steven because he has autism. They would assume they knew exactly what he was like just because of his diagnosis. I have chilled out in my old age and realize that some people will always label our children and there is nothing we can do about it except educate them. Now I try to spread awareness, and promote acceptance for all of those with autism- that alone will make a difference.

I could probably list a thousand more Myths, but I stuck with my Top 8. I would love to hear a Myth about autism you wish would go away or one that has even been said to you. Please use my comment section to let me know. Until next time…




Marriage and Autism

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Marriage is hard, and if it comes easy for you, consider yourself one of the lucky ones. When you put a child with autism into the mix, it gets even tougher. Which is not to say that the both of you are not on the same page about your child. The amount of stress that comes along with the enormous responsibility–of making sure your child’s life has the best possible outcome–can cause conflicts. We do this with our “typical” children also, but when autism–and all that goes with it–is involved, it is a league of its own. Not to mention outside influences, such as family and friends, can sometimes cause stress.

I married my husband in 1988. We were young and had no clue about life. We did what we wanted, when we wanted, and seemed to have no care in the world. After we had been married about a year, we moved to Tennessee from Virginia, so we could start an independent life together. We found marriage not easy, and outside influences did not seem to be good for us. So, off we went, like two people who knew everything about life. Let’s just say we didn’t, but learned a lot by trial and error. A lot of error.

For those that know me, it is not a secret I did not like Tennessee. However, looking back now, it was a great place to raise my children. We lived in a small town, and there is something to be said about that. We did not have all the big city traffic or crime. Most of the people were down to Earth and caring. Plus, I am very thankful for some of the friendships I made while living there. One thing I know for sure is there is no perfect place. Home is where your family and good friends are, and you need to be happy with what is in front of you, in case it is gone tomorrow.

Once we were in Tennessee for a while, I thought about having a baby. In my mind, it would be rainbows and sunshine. Soon after that, our son Steven was born. He was so precious, but a terrible baby-sorry Steven. That was a lot of stress on my husband and I. We never took time to get away, because no one was good enough to babysit him. Or at least, that is what I thought.

During these last 28 years of being Steven’s mom, I have had a very hard time letting people other than me or his Dad take care of him. Will something bad happen to him? Will he throw a tantrum? Will whoever is watching him judge him for the way he is, or me as a mom? It was just easier to stay at home and do it all myself. The truth is, I was hurting my marriage–and Steven–by not doing things for myself or my marriage. Couples that get away, simply are better parents. So give yourself permission to live a life other than a mother or father. I know this is easier said than done but so worth the effort.

When I started noticing something might be going on with our son Steven, my husband and I immediately got on the same page and started investigating why he seemed so delayed in his development. We talked about how to help our son, but the stress from worry was getting to us both. We never really fought about Steven and what was in his best interest. Our fights were always about other things, but looking back now, we did not take time to nurture our marriage. We put all of our energy into helping him, and we had nothing left to give each other.

I have seen so many families that have a child with autism struggle with their marriage. There have been a lot of mom’s and dad’s that simply do not accept an autism diagnosis for their child. Many times I saw the husband leave, or just be so awful to be around that divorce was the only option. I have also been witness to mom’s not wanting anything to do with their children and sending them away to get the help they need.

Mostly though, I have been blessed to know mom’s who are loving and will do anything  to help their child. There are also some phenomenal dads out there-including my husband-that would do anything for their family. Especially their child with autism.

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The one thing I have seen consistently, how well couples do when they are on the same page with their child’s autism diagnosis and treatment plan for both home and school. This however is very stressful and you must both take on the responsibilities of helping your child.

When couples work together as one unit, all things are possible. Make sure you share responsibilities to avoid exhaustion and feel like a team. Do not play the blame game either, your child has autism and it is no ones fault. Each parent individually is already questioning if something they did caused their child’s autism. Be there to support one another, not blame each other. So remember, you need to move forward as one.

Make time together as a couple! I am almost ashamed to admit this, but one time while visiting family, my husband and I went to the movies together and we realized it had been 7 years since we had gone somewhere alone. That is unacceptable, and we have no one to blame but ourselves. Time spent alone together is essential for a healthy relationship.

Make time for yourself, each of you!  YES, you. We all need a little alone time. This is different than time with your spouse. Take time out doing something you enjoy. It gives you time to think and believe it or not is very healthy for your mental state. My husband and I did not do enough of this either. We always put everyone else first, and that leaves nothing left for yourself. So get out there alone, even if for just an hour.

Find the humor in as much as you can! As the saying goes, it is better to laugh than to cry. Our family makes fun of each other all of the time- in a loving way of course. My husband and I find a lot of humor in autism, there are many things that are funny! There is no perfect person in this world and it is OK to laugh at things even if someone else may not. It’s even OK to have a few inside jokes, no one will ever even know.

I know there are several of you reading this that have extended family members that are a problem. When autism is involved everyone will have an opinion of how you should raise your child and what is best for them. This responsibility is up to you and your spouse and no one else! Be honest and upfront with your family. Tell them what you need and what you do not need, it’s OK to let them know. Their support is so important whereas their lack of support and respect for you and your spouse is detrimental.

If you see either set of family members being a problem, seek counseling and figure a way to come together and deal with it immediately. Do not let it be you vs your spouse in a family conflict. You both have enough to deal with and this can make or break a marriage in my opinion. Always approach family as a united front and do not stand for any less than what you deserve: love, understanding and never ending support.

If you are a couple who is just starting out on this autism journey please make your marriage a priority. Spend time together as often as possible. Going out for ice cream or dinner even once a month will connect the two of you more than not getting away at all. Make time to ask how the other is doing and be each others strongest supporter. This journey we are on is isolating and not easy, it can do damage to a relationship without anyone even realizing. Be there for each other and remember you are in this together.


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The Importance of Self Advocacy in Autism

Self-Advocacy is learning how to speak up for yourself, and making your own decisions about your own life. It is learning how to find information independently, so that you can understand things that are of interest to you. Or, finding out who will support you in your journey, knowing your rights and responsibilities, self-dependent problem solving skills, listening to and learning about self determination.

Empowering individuals with autism to speak up for themselves-whatever that may look like- is one of the best things you can do to help your child as they grow. We need to pass this baton to our children as much as possible, and in whatever form they are capable of doing. Here are a few examples that might help:

  • Role Play with them in various settings (home, school, restaurants, etc.). 
  • Teach them how to communicate yes or no.
  • Have them learn about their autism.
  • Build self-esteem. …
  • Help them learn social cues. …
  • Help them learn to problem solve.
  • Have them communicate what they would like to wear-give them 2 choices as to not overwhelm them.
  • Use assisted technology
  • Use medical alert jewelry

As they get older change these examples to more age appropriate skill sets.

You might not think that a child or adult with autism can self advocate, but many are very capable of doing just that. One thing that has proven to be true is, the earlier we start teaching this skill, the more progress in this area your child will attain. It is a snowball effect, in which the child you know today will make progress, so as to not be the child you know as an adult. Please keep that in mind while teaching these skills.

I would like to add if your child has high functioning autism please make this a priority! Not only is this important for their safety and well being, but also gives them self confidence which will only improve these skills as they get older.

Even a nonverbal child can be taught self advocacy through pictures, cues and the constant growth of assisted technology. Any child can really learn how to communicate, with the proper tools for themselves. It can even be as simple and saying yes or no to a want or need. Then, just continue to build upon those skills daily, as your child grows. It is possible for everyone!


When my son Steven was young, and recently diagnosed with autism, the thought of self advocacy never entered my mind. He could not talk, and hardly acknowledged the world around him. However, now that he is 28, I realize just how important this life skill really is.

We all know the progress of those with autism shows up in its own time. I definitely see the times I helped Steven self advocate when he was younger showing up as an adult– now I am building upon those skills. So please talk to your children, because they are hearing and understanding more than you think!

Looking back, I did way too much to help Steven, when there were many instances he was perfectly capable of helping himself. I also spoke for him when, I should have shown him the different ways he needed to speak for himself. Although it is very hard to admit, I hurt his progress by helping him so much that he did not have the opportunity to help himself. However, it is never too late! These days, I still catch myself trying to help him too much. Happily, he tells me he can do it by himself and seems to make improvements daily. My daughter still tells me I help him too much, but she has no idea how much this has improved. I am still a work in progress and that is ok.

I also encourage all parents to talk to their child early on about having autism. Self awareness must be present, if you are going to advocate for yourself. The earlier a child has an explanation about his differences, the better off he will be. My husband and I talked to Steven about his autism when he was young. He might not have had a full understanding, but don’t we all deserve to know who we are?  I pointed out to him why he struggled and why he had the strengths and talents he had. How can you ever advocate for yourself if you don’t know why you are the way you are? Do not be too afraid to talk about it! The older they get, the more their self-understanding will improve.

Those with autism need to understand how autism affects their interactions with others. We would talk to Steven about the importance of good eye contact, and even tried to help him improve his odd behaviors: especially in public. They all need help in this area and guidance to improve. Unfortunately, we live in a world where observations matter and we have always been honest with him about that. Today, Steven self regulates all the things we taught him when he was little, with only needing gentle reminders. Okay, sometimes they are harsh reminders :-).

The other day at the dentist, the hygienist–who is sweet–tried to help Steven hold his mouth open. He did not like this at all, and told her not to do that. While his delivery needs work, if I was not there with him, he still would have spoken up for himself. The fact that he could express his concern, and she listened to him, is worth a million! When he was young, I would have never imagined he could do something like that. I want to express the importance of this, so as parents, you can really concentrate on this crucial life skill. They will not be young forever.

It would also be a great idea if you added some self advocacy goals to your child’s IEP. Teachers and therapists would be a great resource in coming up with how to approach these goals, and as parents we need to follow through at home. This will make sure they have a firm foundation, to produce the progress. We could also add those goals we are doing at home to the IEP, as well as have the teachers and therapist incorporate it during the day. This would have a huge impact in their daily life, which impacts their ultimate life.

After reading this, you might think I am being unrealistic–or even out of my mind–for suggesting that your child will be able to self advocate. My point I am trying to get across is don’t assume that they can’t. While I know all too well that there are different degrees of autism, they understand way more language then you realize when they are little. Even if they learn on a very small scale how to advocate for themselves it will be worth all of the effort.

I also wanted to add if your child still struggles with communicating their wants and needs as they get older, please also consider medical alert jewelry or something along those lines. There are so many different companies out there that specialize in communication for those with disabilities through jewelry, carrying cards, and other forms that are so important to look into. Our children need for those around them to be able to help them in their times of need by whatever means necessary. I am all for whatever is necessary for the well being and safety of our kids.

As difficult as this is to say and to hear, we will not be around with our child forever and we need to prepare them for that in many different ways. I know some of my suggestions seem like an impossible task that will never happen, however we have to try and help them learn these skills to the best of their ability. Not only will it help to give us better peace of mind but also give them a sense of independence and self worth.

Calling All Doctors

While I do not want to make this post too negative–or categorize doctors as all bad–I want to speak my truth. Speak about experiences with doctors, and their support staff. My hope is someone will share this, so it may reach a few doctors and other medical professionals so they might rethink how they care for families dealing with autism.

By doctors, I mainly mean medical doctors, psychologists, psychiatrists and dentists. Honestly, their support staff needs proper training as well. This is the year 2018, and it is unacceptable that any medical professional does not know how to recognize the symptoms of autism. Not to mention, some cannot properly interact with those on the spectrum. They are human beings for goodness sake and they want to be treated like everyone else.

When doctors first see a child in their office, they should have a heightened awareness if they see social communication challenges, or repetitive behaviors. For example, Steven clapped his hands repeatedly. It is also well known children with autism have a hard time with eye contact. Why should we, as parents, be responsible for educating medical professionals on what is going on with our child? Let alone explain how doctors should help the children!

When a child has autism, it sometimes comes along with other disabilities. Many doctors still do not know a range of physical and mental-health conditions frequently accompany autism. Steven also has Dyspraxia of speech, Tourette’s and Obsessive-compulsive disorder (OCD). A doctor needs to know autism might not be the only thing going on with a child. If this occurs, the child will miss out on much needed medical intervention, as well as a crucial early therapy. The prognosis of your child will be much better.

There are also a lot of doctors that are know-it-alls. This quality does not make a good doctor. These children/adults are unique, though many doctors assume–because of their diagnosis–they will be a certain way. This can’t be further from the truth! I cannot tell you how many times I have gone to a new doctor, only to have them talk directly to me: like my son does not understand language. Let’s stop assuming autism has one definition and learn about the individual: not the “autism.”

Let us also talk about compassion and bedside manner. Frequently, there have been doctors that have truly cared and shown compassion to both Steven and our family. We were so thankful, at the time, for their support. However, in all these years, that has not always been the case. Why is it such a big task to treat these children–and their family–with kindness and compassion? Not to mention, try to understand what they are going through! Many parents can relate to that fact, of which doctors and their staff almost immediately get a defensive attitude when you try to tell them the needs of your child. Shouldn’t we, the parents, know them best? Whatever happened to working together, for the best interest of the child? As parents, we need support; and having it from doctors should not be a “maybe” scenario.

Over the years, I’ve learned not to let my expectations of doctors be too high. If they do not know what my son’s needs are, I find a new doctor. If they have no bedside manner and are a good doctor, I stay with them for the benefit of my son. I feel like it is continuous trial and error and I think this is true for everyone. What has worked best for me, has to be helping new doctors understand who Steven is, and what his needs are. Then, we always try to come up with a plan we can do together, to help him succeed.

If you are a doctor reading this, please continue to educate yourself on autism and what kind of support a family might need. This is a tough journey they have ahead, and you could make a major difference. Not only in their lives, but in the outcome of their child.

To all parents/caregivers reading this, never give up on finding a good doctor for your child. There will be good and bad that come along. Figure out if the doctor is willing to go that extra mile to help. If they are, chances are good that your child will be taken care of, and your family will be headed in the right direction. Most importantly, never second guess yourself, if you feel you should leave a doctor. If they do not have the best interest of your child in mind, their prognosis might be compromised. Your child deserves the very best.

According to Caresync, here are the 7 Traits a Doctor should have, and I agree with all 7:

#1. Confident- having strong belief or full assurance

#2. Empathetic-of, relating to, or characterized by empathy, the psychological identification with the feelings, thoughts,or attitudes of others:

#3. Humane- characterized by tenderness, compassion, and sympathy for people and animals, especially for the suffering or distressed:

#4. Personal- Relating to

#5. Forthright- going straight to the point; frank; direct; outspoken:

#6. Respectful- full of, characterized by, or showing politeness

#7.Thorough- executed without negligence or omissions

I want to end on a positive note by saying there are many good doctors out there-Steven has had quite a few. We as parents with children on the spectrum just need to do a little more research to find them. The good news is with more autism awareness, education is getting better. To all the doctors that dedicate their lives to helping others, it is admirable and inspiring. Thank you for what you do.heart-3612853_640

This is my last post of 2018. My hope for everyone in the New Year ahead is Health and Happiness. See you in 2019…