Autism Spectrum Disorder can be very challenging for both the child and the immediate family members interacting with the child on a daily basis. I have experienced a variety of these challenges and I know, first hand, how defeating it feels from time to time. It is so important to learn as much as you can so that when a situation arises, you have recourses to utilize, information to lean on, and support from educated individuals, to help guide you when life gets tough.
I only speak from experience, as I will be in 90% of my articles, and I have become aware of many of the things I will speak about through trial and error. I feel that it is very important to not only become aware but also help other people become aware, of the different ways parents and guardians cope with and handle an autistic child within the family.
This is my first article about the topic and I want to make it clear that there will be many, many more. Having a son that is on the spectrum, and having the opportunity to experience this type of lifestyle, gives me hope that I can reach other parents, as well as find more support for my own family, through my writing and discussions.
My story starts when my son was in first grade. We had issues here and there before first grade, but this was the year that poop really started to hit the fan and action needed to be taken. He became so overactive that he couldn’t focus and he was disrupting the class quite a bit. I couldn’t tell you how many trips I had to make to his school, either to receive a lecture on how his behavior was getting worse or to lecture them and give them a piece of my MommaBear mind. It was constant. One thing after the next. He had appointments that required him to miss class, which didn’t help his skillset in the classroom, and then there were observations in and out of school. I spoke to his pediatrician about it and bawled my eyes out while I was saying everything out loud for the first time. This was when I realized we had a real problem on our hands. His pediatrician (at that time, we have since switched) gave my son a quick diagnosis of–just guess–ADHD. He was 7 and diagnosed with ADHD. Does this really even make sense? Nobody wanted to give me the time of day and treated me like I was just another parent trying to over analyze everything my son did. In reality, though, everyone was trying to tell me that we needed help and I, other the hand, was defending my son to the fullest and in complete denial that anything was wrong. The results of his observations came home and as I read over them my face was soaked in tears. They made him sound like a monster. They made it sound like the other children were fearing for their lives during recess. This was the first time I went to his school in an effort to show them who’s boss. Nobody was going to make my child out to be a monster, or a trouble maker, or anything else that I didn’t agree with.
A few more years had passed and my son had been on a few different medications and he had an entire year that went pretty well. Then it seemed as though the medicine he was taking wasn’t working anymore. His pupils were huge, he was spacey, and he wasn’t my baby boy anymore. I took him off the ADHD meds and let him go all summer without anything. He did great and it didn’t seem to bother him much at all when he stopped taking it. His attitude got better and he could actually make sense when he spoke to me.
Then 2017 came rolling around and after all the partial tests he had done, appointments he had during class times, and the on-off-on-off cycle of multiple medications, I finally talked the school into doing a full observation on him during his class time! It was the best day of my life because I knew once we got this done, I could finally get my son the help and resources he needed. Ironically enough, I got the results back on my birthday and celebrated at their findings. Not because I was happy about the verdict, but because I was happy and excited to finally be able to find help and support with this diagnosis. The school has been one of the hardest things to manage with my son. It really counts to have a great school that truly cares about each child and each child’s needs. I have had my son in 2 different schools that I regret sending him to and then I have had him in two schools that took the time to listen and always considered my requests for specific things to happen with him. My son starts middle school in one week and I don’t feel half as terrified as I did a few years ago, when I was desperately trying to find help and support. I mean, I did everything I could think of to get him help and me! Finally, after years of not giving up, we got the diagnosis through the observation I had been begging them to do on him for years.
What is Autism Spectrum Disorder?
- Autism refers to a variety of challenges having to do with areas of social skills, repetitive behaviors, speech, and nonverbal communication. All around it affects the ways of communication.
- I see this in my son so much. He struggles with communication and sometimes I feel like it’s getting worse. When I first started to realize this, I had a hard time trying to see where is troubles were stemming from. I thought I was doing something wrong as a mother, I thought there was more to this disorder than what the doctors and therapists were telling me. I was terrified that I wouldn’t be able to make my son feel included or accepted in family gatherings or everyday family time. An awful way to feel as a parent. I suppose the positive side to this is that he doesn’t even notice there is a communication issue at all. The downside to this is that it makes it tough to tell your child that you don’t understand him/her, that what they are expressing to you doesn’t make much sense, or that what they have said to you doesn’t clearly define what they really mean. As you can see, it gets quite complicated at times.
- The amazing fact in this scenario is that every autistic child has a strength or something that they are very great/talented at doing. While they do struggle with communication and certain areas of everyday life, depending on the spectrum, they have a spark inside of them that makes them fantastic at something else. It varies with every child. Some will have a knack for reading or math. Some will develop amazing skills for electronics and enjoy taking things apart just to put them back together again. They like to know how things work and I think that is amazing. My son, for instance, loves to play Xbox One and is now advanced enough in his skills that he is going to start saving his allowance to purchase a PC and Monitor to take his gaming to the next level. I have seen first hand how talented he is at creating obstacle courses that look professionally created online for his games. I am supporting him in his endeavors in hopes that one day he will use his gaming skills to become a game designer or help other gamers that are unsure of how to utilize the game’s assets or tools. A virtual assistant of sorts. Although right now he is just an amazing gamer that kills it online, there are so many outlets for future creativity there. He wants to start making videos and streaming them for others to see and he has even tried to make tutorials for certain games to help others that didn’t know what to do next. He didn’t like that very much but at least he tried it and can cross that off the list, for now.
How does Autism “happen”?
- Laying the foundation for understanding where Autism Spectrum Disorder comes from:
- According to Medical News Today, Autism occurs within the first three years of life. It is a neurological disorder affecting the brain’s function, development of communication, and development of social skills.
- In school, my son excels at reading ( but he can’t process what he has read and repeat it back to you or retell the story). He is fantastic at social studies and does pretty well in art class. Math is his least favorite class, and it shows. He has always had issues in math class and he is still trying to learn the difference in coins and dollar bills. One time, when I was taking him to school, he asked for five dollars. I handed him a five-dollar bill and he said, “No mom, I need five dollars”. I have tried a variety of ways to help him learn about money and none of them have helped so far. If you have any suggestions please feel free to voice them.
5 Mom Tips for Understanding Your Autistic Child
Tip 1: Be Patient
- Learning patience throughout this journey has been both an amazing lesson and a thrill to learn something new in which I must learn patience for, and then the other side to this is the feeling of hopelessness in not being able to do everything possible to keep my baby safe and comforted. I couldn’t tell you how my son feels every day but sometimes I can see it in his eyes that he is searching for answers and his mind is racing 100 miles per hour, and he just wants someone to tell him what he should be doing at that very moment. Other times I am completely wrong and he already knows exactly what he is doing and the last thing he needs is someone telling him to do something different. This guesswork and trial and error part of our life make for a pretty hectic day at times. For example, one day my son was following me through the house and we were just talking back and forth. My other kids were running viciously through the house and the entire house seemed to be in an uproar (to my fiance) so he felt he needed to calm things down. My fiance told my son to go to his room or sit down. My son said, “I’m standing by my mom and I’m not going to my room and I don’t want to sit down”. This went back and forth and finally, I chimed in and said he is fine and is not bothering me at all to just let him be. This is where things get dicey and this is why parents need to be on the same page in understanding where their child is on the spectrum. My son knew what he was doing, in his head he knew why he was following me around and he knew this was his comfort zone at this specific time. All he knew was that he wasn’t going to move because he was in the middle of doing something-spending time with mom. He didn’t know how to express this in any other way other than to say, “I’m not moving and I’m standing by my mom”, and to some people, the way he had said it, would have sounded disrespectful and defiant. I knew he wasn’t being disrespectful or defiant. He was in his comfort zone and he was refusing anything to take him out of it. He just doesn’t know how to voice these things. This is why patience is so crucial. Times like these, when you have to learn how your child responds to environments and “demands”. This is something our family struggles with two years after the official diagnosis. It is tough finding the thin line in disrespect and just stating facts, which is what my son does (as well as other autistic children) when they don’t know how to explain things. All they know are the facts and how to bluntly state them with no emotion. To an adult, this can seem frustrating and hard to accept, especially when respect is valued very highly to that person. Patience, patience, patience is the number one key to coping and learning about autism within your family household.
Tip 2: Research
- If you have a question- look it up, Google it, Reddit it. Don’t ever be afraid to ask the simplest of questions when it comes to figuring out the best way to understand and help you child learn and grow. There are so many parents dealing with the same issues that you are experiencing, so don’t be afraid to seek help.
Tip 3: Listen and Learn
- You will catch on to how your child communicates wants and needs in his/her own unique way. I started to realize how much I didn’t know and how much I didn’t truly listen to my son very recently. I have since then changed how I interact with him and how I respond to what he says to me. My patience has also gotten so much better since I now know that he doesn’t always mean exactly what he says, in the exact way that he says it.
- An example of one of the ways I have learned to communicate better with my son is that I used to chime in and pretty much interrupt him when he was speaking to me. He can’t stand when someone does this and I had to learn the hard way that I needed to listen to every word he had to say, even if I knew where he was headed with it, and then start talking when he was finished. I struggled with this at first and still do at times. I am used to having a back and forth, “chime in when you get excited” or have a word to toss in about “this” and “that”. Maybe I do tend to interrupt a little bit, but I swear it’s because I would forget what I was going to say if I didn’t. Seriously. So, this has helped me to practice things that I needed to learn more about in my adult life as well. I no longer interrupt him and if I slip up and chime in on a topic before he is finished I close my mouth up and wait while he restarts his entire conversation over again. He will restart from the very beginning if anyone or anything interrupts him and I have grown more patient through understanding this experience and how he operates.
Tip 4: Repeat what they have said (in your own words) to express that you understand their wants/needs clearly
- I learned about this special technique recently. One day he was asking me to make him a bagel. Sounds simple, right? Well, no. His expression and example of how many bagels he wanted threw me for a loop by the time I realized that he simply wanted one single bagel. He told me that he wanted his bagel like he wanted his toast. I make him two slices of toast at a time. This is where I got confused because he told me he wanted two bagels, just like when I make him toast. So, I made him two bagels, separated them like I always do, and gave them to him. What he really wanted was one bagel separated like his two pieces of toast. He got upset that I didn’t understand his explanation and I tried my hardest to explain to him why I made him two bagels instead of one. This is probably too confusing to go into even greater detail about, but as an example, it will work. You wanna know the craziest part of this story? He was able to explain exactly how what he had said really did make sense. By the time I shut my mouth and let him speak his piece, he had me understanding exactly how he did make sense by comparing his bagels to his toast that he usually gets. He had said he wanted two bagels, which really meant he wanted one bagel separated into two halves, like his toast. Although the only way to understand his explanation would have been to ask him what he really wanted in the first place and repeating it out loud to him so that he knew I understood what he was asking me for.
Tip 5: Ask your child questions to clarify and avoid a possible uncomfortable situation.
- I could also use the above example in this category as well. But asking questions to clarify also applies to other things. For example, when my son is doing his homework he will pretend to know what he is supposed to do. I will ask specific questions so that I know for sure if he is just trying to get me away from him so that he can goof off or if he really does, in fact, know how to do his work. Also, another example would be when he wears clothes with tags or the jumpsuits that make noise when they rub together as you walk. He used to try to wear these things and come to find out he never has been comfortable in them. I have decided when I buy him new clothes with different materials I will ask him how comfortable he feels in them. If he even slightly suggests he doesn’t like something about the item I will return it because I know he will eventually hide it from me and stop wearing it all together. Asking detailed questions go a long way and can help you avoid a problem in the future. Being able to recognize things that make them uncomfortable, as these situations occur, can also help you better prepare for the next time you have to tackle that specific situation in the future. Write these things down, carry a list in your wallet, or use a notes app on your phone. Whenever you need to be sure of something you can just pull this list out and double-check in the moment.
The Last Thing You Need to Know
- Talk to other family members that spend time with your child. Whenever a new situation arises be sure to jot it down so that you can express your thoughts about what you feel is best. If you must wait, don’t forget to bring this conversation up at a later time (hence: jot it down). I carry extra note cards in my purse for this. It is very important that everyone is on the same page.
- Bond, bond, bond with your child
- Summarize the post in 1-2 key take away
- Always end your posts with a question to your reader. You want your readers to engage, share and leave comments with your articles. Whenever you can interact with your readers, do it, it builds trust and a relationship!
Questions to ask yourself:
- Would my child benefit from counseling and/ or a therapist? What about occupational therapy?
- Always ask yourself “Is there a subtopic related to this that I can learn more about?
- For example, if you just found an article on “the sensation issues that autistic children face”, is there a similar, yet different, subtopic that you can research (maybe you can find one in the article itself) and dig even deeper. Reading about one topic will most likely lead you to another topic that will catch your eye. Branching off of each topic and learning in this way will also help clarify how all of the information ties together. I started understanding problems that he/we face at a much deeper level. Being able to put those puzzle pieces together really helps out in the middle of “information overload”.
- What are the different resources that I can utilize for my child and for myself?
- How will this affect siblings?
- I have four children and my oldest is autistic. I can see how it affects my younger children in a few different ways. There have been times that they have all been in the same room and I thought my heart would jump out of my chest due to anxiety, and probably a little bit of heart palpitation. I get nervous sometimes. Am I wrong for it? No, but some people would argue with me on this. Anyways, depending on the mood of your autistic child, sibling interaction can either be a beautiful dream that you don’t want to wake up from (awe moments) or a night terror (agh moments). Huge difference, I know. Autism is special like that. Usually, I can read my son’s body language when he walks into the room (and toward his siblings), and I can predict what is about to happen. Once you have patience, research, and a few other things under your momma bear belt, you will also be able to predict a “coming soon” situation that is about to unfold in your living room and you will learn how to tackle them before they happen. Patience is a biggy here because you need to be able to sit back and observe things even during times that you feel like you should intervene. It’s tough to judge and predict a situation if you have never watched it unfold before. Don’t be so quick to “fix” things until you become aware of what it is that needs the “fixing”. I can’t tell you how many times I thought my son was about to get upset or say something out of line, and I jumped in too early to “stop him”. I ended up looking like a fool and upsetting him even more in the process. I was more worried about him doing something that might lead to him getting upset, or that might lead to someone taking him the wrong way and I made the situation worse in the end. Let these instances play through so that you can actually learn from them. It’s tough, at first, but after a while, these moments that you feel unsure about will go away completely because you will be sure about them eventually.
- What are my child’s strengths?
- Finding out what your child’s strengths are will help tremendously. I strongly believe that focusing on strengths, instead of weaknesses, is so much more helpful than building better skillsets and training harder on weaknesses or struggles. Not only for autistic children but for everyone in general! Why would we allow our strengths to sit on the back burner and dim out? Why would we try to focus on our weaknesses, or what we struggle with, when we could put that focus toward something we are already great at and comfortable with and make it an even greater and more powerful strength?! In my opinion, and through personal experience, I advise to focus on strengths and help your child gain confidence in what they love and enjoy. Make the main focus about their strengths and find ways to add in what they need to practice more of in tiny snippets here and there! They’ll never notice if you don’t point it out and you will be killing two birds with one stone! It makes learning and growing so much easier because they will enjoy it, especially when the child is so hard to please.
Don’t worry about where to start. Just start. Let it all unfold and learn from it. Trying is enough. Don’t forget the bigger picture and all the small details will fall into place as you gather them.
Remember-You are not alone and neither is your child.
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