Getting a New Autism Diagnosis - Finding Help and Support
At Blue Parachute, we know that everyone’s journey is different. Some individuals will begin exhibiting signs to their parents, pediatricians, and other individuals that immediately indicate they might have autism spectrum disorder (ASD). For others, realizing that a person you care for is on the autism spectrum might be more difficult. What happens when you receive a new autism diagnosis for a loved one or even for yourself?
Autism is referred to as a spectrum disorder because various traits can identify this condition. Not everyone will have the same characteristics. On top of that, these indicators can be very prominent, or they can even be close to undetectable.
Do you wonder, “Should I get an autism diagnosis for my child?” It can be hard to learn that your child or loved one isn’t neurotypical like the majority of society. Many families have neurodiverse children who are on the autism spectrum, or they have attention deficit hyperactivity disorder (ADHD) or other neurological or developmental conditions. These families understand that having a child with ASD might be challenging at times, but it is also incredibly rewarding.
We recently met with Teresa, who works in Information Technology Security and Compliance. She is the mother of two. She and her husband, Vince, live in Central Florida with their children, Bella (15) and Alex (12). In 2021, at the age of 9, Alex was diagnosed as being on the spectrum.
Recognition and Diagnosis
Were there any signs or behaviors that led you to seek a diagnosis for your child? Or can you tell us his story and detail how the diagnostic process unfolded?
With Alex, we had suspected for about a year. We knew we were heading down that path of getting him diagnosed with autism, and his diagnosis was more of a formality. His therapist, his doctors, myself, and my husband had already kind of come to the conclusion that he was on the spectrum.
Going back to when he was younger, there were signs that we didn’t even realize were indicators. For example, ever since Alex was four years old, he has had problems with speech and with reading. These were pretty generic run-of-the-mill problems. We didn’t think they were anything out of the ordinary. Just your basic speech issues and not pronouncing words correctly. We also thought that his speech issues were causing him problems with reading.
Alex would try to say a word, but it wouldn’t come across correctly. But even at an early age, when he was about two or three years old, he was smart enough to find another way to get his point across. If he wanted water, he would say what he thought was water. But we couldn’t understand it. Alex would think for a second, then say another word, like drink. We could understand him saying drink. “Oh, you want to drink? Do you want water?” And then he would say yes. There was always a way for us to communicate with Alex, so at that early age, we didn’t think that there were really any developmental issues or other issues. Even at his regular doctor’s appointments, no one would notice his progress as atypical for a child his age.
We sent him to kindergarten in 2016 when he was five, and we had no disciplinary issues. He did, however, struggle with reading and writing. He continued to struggle with reading and writing as he got older.
When he was in first grade, we started speech therapy for him once or twice a week. He did that for the entire school year and had small improvements. But it was like a brick wall was there when it came to anything dealing with reading and writing. He had very concrete thinking. He flat-out refused to do any of it. We worked with his teachers, and slowly, through second and third grade, it got a little better.
Unfortunately, COVID hit during third grade when he started to really show improvement. This was March of 2020. It was almost as if all learning had stopped for the last quarter of school. The schools weren’t fully prepared to go from being fully in-person to fully remote overnight. On top of that, my husband and I were working full-time and trying to educate both of our children. At the same time this was happening, my husband’s mother – Bella and Alex’s grandma – found out she had brain cancer. We were dealing with multiple issues every day.
During the first 5 or 6 months of COVID, Vince and I were trying to be there for Bella and Alex while also trying to find out why Alex was having meltdowns and spending quality time with all of our family. Unfortunately, Grandma passed in July of 2020.
As all of this was happening – COVID, remote learning, issues with reading and writing, and grandma passing away – Alex became very depressed. He began to exhibit a lot of anxiety. That’s when we started looking into therapy options. We wanted to help him with his depression and anxiety. We also wanted to figure out why he was having problems reading and writing.
When Alex had issues, he would use avoidance tactics and then melt down. For him, this typically started with refusing to do a task we’d asked him to do. Then he would try to get out of it by using circle logic and saying he didn’t need to do it. My husband and I would insist and put our foot down. That’s when Alex would get really upset and start to cry. He would say things like, “You’re bad parents,” or that he doesn’t understand the task. Vince and I did our best to remain calm. We tried to let him know we were there to help and support him.
As Alex was having a meltdown, he would begin realizing that his reasoning would not work. He knew he couldn’t get out of doing his homework or whatever the task at hand was. What started as a meltdown would become a full-on crying panic attack. He would enter a spiral of self-shame and say things like, “I’m not smart enough. I’m not good enough. I’m a bad kid,” and things like that.
The situations typically ended because my husband and I needed a break. Alex also needed time to himself so he could calm down. It seemed that Alex would never return to the task he was supposed to do. It was a seemingly never-ending cycle that continued until, before we realized it, we were at summer break.
We could see he had anxiety and depression, and we suspected he needed a mood regulator to help him with that. We had gone to his pediatrician by then, and we had set up an appointment for his first therapy. Also, partially due to COVID, there was a three-week wait to get him in.
In August of 2020, school resumes. Due to COVID, it was still a virtual classroom. Though Alex was now in fourth grade, he had regressed to a second-grade reading and writing level. We talked with Alex and told him if he needed to take a break, he should walk away, and we’d message the teacher to let them know. But that didn’t work well.
Around November 2020 was the first appointment with that first therapist. We even went back to this therapist for a second and third visit. But this therapist did not work for us. He wasn’t a great fit, but we found another therapist who Alex still sees in 2024. People might not realize that finding the right therapist or specialist for you and your child isn’t always easy. Sometimes, you need to try a few people until you find a person or team everyone feels comfortable with.
After the first session with the second therapist, Vince and I had our own private session with the therapist. The first thing he said was, “I think Alex has autism. I think he is on the spectrum. Some things that Alex is doing show more of a neurodivergent tendency and not a typical 10-year-old boy type of behavior. He exhibits immature behavior. Call these people to make an appointment, but it’s going to be three months before you can get in to see them. We’ll have therapy once a week or twice a week if you need it. Until then, we’ll work through some things. We’ll start highlighting some things to create a more visual map of Alex’s neurodivergent brain. This will make you better equipped when you go to your appointments to understand the behavior.” His therapist is a general, licensed therapist who does talk therapy with Alex, but the therapist cannot prescribe medication. That’s why he recommended the psychiatrist.
Soon after that visit, we made an appointment with the neurological psychiatrist. The therapist was correct – they were three months out. The appointment was made around December 2020, but Alex wasn’t seen until March 2021. We continued going to therapy once a week with Alex. When it started, it was all online and virtual. Then we started doing his sessions every other week in person, which was nice.
Though virtual therapy can be great, for Alex, going in person meant fewer distractions. At home, he had his creature comforts, and he would walk away from the meeting if he didn’t like what was being said. When we were in an office with a therapist, there was nowhere for him to go.
The neurological psychiatrist diagnosed Alex with autism in early 2021. That’s also when he was diagnosed with attention deficit hyperactivity disorder (ADHD), depression, and anxiety. As I mentioned at the beginning, the diagnosis was mostly a confirmation. Therapy has been great, but the psychiatrist gave him medication to help him manage his condition better.
What was your initial reaction to the diagnosis?
It was very overwhelming at first, but today, I know there are many benefits of an autism diagnosis. In the beginning, even though there is much material out there for children with autism, I mostly found information on toddlers who are three or four and nonverbal. Maybe they can’t walk, need speech therapy, or they throw temper tantrums. But there is a difference between a three-year-old and Alex, who was nine when he was diagnosed.
My husband, Vince, was probably a little more relieved. He started understanding Alex’s behavior a little bit better and being more patient with him. Vince started getting on board with different ways of doing things and being more patient with the meltdowns.
Then there was me. I started having panic attacks. My mind was racing. I was asking myself so many questions that I didn’t know the answer to. “What do I do now? How do I advocate for my child? How far do I go? Do I need to start looking into occupational therapy? Do I need to start doing autism research? Do I need to reach out to tutors? Who should I tell at his school? Who should I NOT tell at school? Should I tell the teachers or the other staff so they’re better equipped with it? Are they going to be supportive? Or are they going to be unsupportive and build a case to kick my child out of public school? Is this diagnosis giving them more weapons to build a case to kick my child out of school if he becomes too difficult to handle?” Alex was already nine years old with a creative brain and the willpower and vocabulary to use and wield against others. By this age, he was much better equipped to fight back verbally.
I had other concerns, as well. I feel that for most people, if they were to meet Alex and talk to him, they might never realize he’s on the spectrum. That is unless something odd happens, and all of a sudden, this child that you just met has a meltdown out of the blue. For new teachers or substitutes, this was hard. If they said they would teach math at 10 o’clock but changed it to reading, this would cause a meltdown. Math is his favorite subject. He’s been looking forward to math at 10 o’clock, and suddenly, they decided it’s no longer going to be math at 10 o’clock, but instead, it will be reading. He hates reading. He didn’t mentally prepare for that. Now he’s having a meltdown.
Once my brain calmed down, I realized there was nothing wrong with Alex. He’s just different from neurotypicals. That’s when Vince and I started going through many of the issues we saw with Alex. We began opening it up beyond school and focusing more on handling Alex’s meltdowns. We worked on finding new ways to calm him down, communicate with him, set boundaries, and things like that. Most importantly, we really wanted to teach him coping strategies to help him be able to control his emotions and regulate himself.
Collectively, Alex’s therapist, my husband, and I decided to take a step back from the education. We weren’t going to push as much regarding education. Instead, we focused on getting Alex through the neurodivergent-related problems he was having. We were trying to be better equipped to handle the day-to-day with Alex, my husband, myself, and Bella.
Life at Home With an Autistic Child
What activities or strategies have proven effective in creating a supportive home environment?
We learned we don’t need to lose our patience and be frustrated or punish him because of some odd minor diversion in our day that isn’t going his way. We needed to change that narrative.
Alex does not like change. To compensate, we try to set up a schedule for him. But what happens when the schedule needs to change now? We need to give Alex a few minutes and let him work through his emotions. To think about and get used to the change. As soon as we get the first warning of whatever change is going to happen, we’ll tell him, “Alex, it’s looking like we’re not going to get to this right at this moment. We’re not saying no, we’re not going to do this. We’re just saying we can’t do this right now.”
Then, we need to give him a very concrete idea as to when the change is going to happen. For example, if we told him we were going to dinner at five o’clock, but we needed to change the time to later, now we know that Alex can’t handle the word “later.” That’s a word that can have too many meanings. He needs something more specific. Now we say, “We need to wait 60 minutes,” or “We’re delayed by an hour,” or even, “We’re changing dinner to six o’clock.” We make sure the message is more specific, like a set time, and something that Alex will understand. Plus, when we tell him about a change, on top of being more specific, we give him a few minutes to let his brain process it, almost like taking a timeout. We have him play a game or distract himself for a few minutes.
Once we started communicating like that, there were fewer meltdowns. Alex learned to better regulate his expectations and move forward when there is change. We’ve used other tactics as well. I already mentioned how we taught Alex some coping strategies. Then, sometimes, I will go in the opposite direction. I won’t tell Alex too many details.
I’ll say, “I need to run errands, and we’ll go to your favorite place for lunch. Do you want to come with me?” I’ll do this instead of telling him exactly where I need to go? This way, it doesn’t throw him off if I have to divert from that or make a change for any reason. When I present the option this way, and he says, “Yes, I’ll go,” then I remind him, “You need to behave. You’ll get to do some fun things, and so will I. And if you behave, we can eat at your favorite restaurant for lunch.” It immensely helped when we stopped telling him more details about things.
A few years ago, the Festival of Dancing Lights moved from Hollywood Studios to Give the Kids the World. We bought tickets to see the lights, but we told Alex, “We’re gonna go to a Christmas party.” We didn’t give him any details beyond that. If we had told him, “We’re going to Give Kids the World, and they’re going to have all these cool lights and other things,” we might get there, and he might be excited about an adventure. Alex tends to build a huge, unrealistic picture in his head when we give him too many details. When there were a lot of details, we would arrive at something, and his expectations were unrealistic, and he would become disappointed. But if we just said, “We’re gonna go to a Christmas party from this time to this time, and you’re coming with us. Do your best. We think you’ll enjoy it.” Then, Alex won’t have too many preconceived notions when we get there. He’ll start looking around and realizing that he’s enjoying himself. He’s more open to new things when he has prepared his brain to expect the unexpected.
The Many Strengths and Talents of Neurodiverse Individuals
What unique strengths or talents have you observed in your neurodiverse preteen?
He has a really good sense of humor, even though he’s unaware of his sense of humor. He can be very sarcastic, crack a lot of jokes, and be very funny. He has a very kind and caring soul, and he’s a very giving child. He stands up for his school friends, even if they’re awkward. He’s usually the first person to defend anybody in his school who’s slightly different.
Alex’s classmate, who is also on the spectrum, is in his first-period class. She gets panic attacks when the noise level in the classroom goes too high or there is too much noise. This classmate basically doesn’t like any noise. Day-to-day, she’s usually OK because the classroom is calm, collected, and quiet. But one day during the first week in December, there was a substitute teacher. The substitute did not have control over the kids. Everyone in the class was getting louder and louder. They were purposefully trying to irritate his fellow student who was on the spectrum to make her have a panic attack.
Alex realized what was happening and saw his classmate was starting to have a panic attack. He yelled at everybody in the classroom to sit down and be quiet. That’s when the bell rang. Alex told the substitute teacher to stay with his classmate, and he said, “I’m gonna stop anybody from coming into the classroom.” He helped get everybody out of the classroom and left the substitute with the student who was having a panic attack. Alex left the classroom, closed the door, stood in front of it, and stopped everybody from coming in. He told everyone, “No, you can’t come in. She’s having a panic attack.”
He then saw a friend he could rely on was heading to that classroom, so Alex told them to get the dean. Since Alex had to get to his next class, he put another reliable friend in charge of not letting anybody in the classroom. Those two students helped with one staying in the front of the classroom and the other getting the dean.
Later in the day, the dean called Alex out of class. Alex thought he was going to get in trouble for what he did. But the dean called him in and basically said, “Alex, I wanted to take you out of class to say thank you. You did an excellent job today. Thank you for stepping in, helping the substitute teacher, taking charge, stopping the other kids from coming into class, and preventing the panic attack from further elevating.” Alex knew how to handle the situation from his own experience. Because he had learned how to calm himself down, he knew how to calm his fellow classmate down.
Challenges and Coping Strategies for Autism Spectrum Disorder
What are the biggest challenges that your child or your family faced after the diagnosis?
When Alex was diagnosed as on the spectrum, it seemed pretty intense going to different therapists. I’ve already explained that one of his triggers is when there is change, so we knew the situation was a lot to handle. I also mentioned how the neuropsychologist was able to diagnose him with autism spectrum disorder, ADHD, depression, and anxiety. Between medication and therapy, we’ve better controlled these conditions. But these are related to his mental health, and we still haven’t tested him for any possible learning disabilities. It was hard because we wanted to get him some help as soon as we could, but at the same time, we didn’t want to make him undergo too much at one time. It was a lot, and we needed to give him a break.
Now, he’s falling behind in school, and he’s struggling. He’s almost at grade level but not quite at grade level. He blocks himself and has severe anxiety about testing, and these tests don’t reflect where he really is. He’s done well enough that they’ve passed him to the next grade each year, but we’ve long suspected that Alex has dyslexia or dysgraphia. Many people have heard of dyslexia and associate it with seeing letters out of order or having a hard time reading. Dysgraphia is similar, but it’s more when a person has problems putting pencil to paper. We’ll ask Alex to tell us a story. He has no problem telling us something very creative and elaborate. But when he has to come up with a story and write it down, that’s really hard for him.
We took Alex to have formalized handwriting assessments, the Beery Developmental Test of Visuomotor Integration (VMI), and other tests that can diagnose dysgraphia. Our insurance didn’t cover some of the tests, and we had to pay for them out of pocket. We’re still waiting to see what the doctors found. Once we get the testing results back, the next step will be to work with his school to develop an individualized education plan (IEP).
Steps After an ASD Diagnosis
After the diagnosis, what steps did you take to ensure your child received the support they needed?
His school has actually been really helpful. One of the things I was worried about was school. We lucked out with a good school administration in his elementary school during the fourth and fifth grades. They were on it and very helpful. We had a huge staff of people at his school who knew what to do when he was having meltdowns in class. They really, really wanted to help him and went out of their way to make sure they could help. That’s another reason we didn’t do any additional testing right away. The school did its own testing for learning disabilities, and Alex was diagnosed with a generalized learning disability. They’ve made some accommodations based on that.
My husband and I also began advocating for our child, but we could only go to a certain point. We try to find a happy medium between accommodating Alex’s issues – I don’t even want to call them issues. Alex’s particularities. His challenges. Challenges with day-to-day life. Things like understanding his teacher is teaching a classroom full of different students. Alex is just one, and the teacher can’t solely focus on him. The instructor might not know how to help students with a new autism diagnosis. Alex can do many things, but there are still a few things he cannot do without accommodations. We always try to work within the boundaries and be upfront about them until we find solutions that work.
Autism and Preparing for the Future
What are your concerns for your neurodiverse child as they transition into adulthood?
We are very fortunate to have provided what we can to both Bella and Alex. We have great kids, and we’re excited about what they will do in the future. The one thing that concerns Vince and me is that Alex doesn’t understand how difficult life can be sometimes. That can be true for anyone, whether they are on the spectrum or not. Someone gets a preconceived notion in their mind about what it’s going to be like in the future. Alex has improved so much, but he still gets triggered. As his parents, we, and even the staff at his school, can make accommodations for him when needed. That’s part of what makes Alex think that life is easy.
What will happen when Alex gets older and goes into the workforce? It’s something we think about often. For example, we wonder what will happen if Alex gets a job at a fast food restaurant and he has to wear plastic gloves. But he hates how plastic gloves feel, and he’ll refuse to wear them. At home, it’s easier to pick our battles. But at work? We worry Alex might take longer than average to find a job he likes.
Reflection and Advice for Raising a Child Who Is On the Spectrum
Looking back, what would you want other parents to know about raising someone considered neurodiverse, or is there any advice you wish you had received when your child was first diagnosed?
There is one behavior that we didn’t realize was a common behavior with many who are on the spectrum. Until we started talking to the therapist about Alex, we didn’t even realize that Alex’s most challenging issue was change. That is his biggest obstacle to get through the day. Alex likes having a schedule. He does not want to divert from that schedule. When something happens, and you need to go a different direction or do something differently from how the schedule was originally laid out, he was unable to handle it in the past. It could be something as simple as going to a restaurant. We would tell him that we’re going to this restaurant and you’re gonna have a hamburger. We would then get to the restaurant, and they would be out of hamburgers. This happened once before! Something like that led to Alex having a meltdown. A nine-year-old child in fourth grade is having a meltdown because he can’t have a hamburger. Before the diagnosis, we thought maybe we were bad parents. Or that our child was just spoiled and used to getting whatever he wanted. We even thought we needed to be more strict with him.
That wasn’t the case at all. We learned it was Alex being on the autism spectrum and learning that one of his triggers is change. Vince and I started changing our ways. How we talked to him, and the way we set up expectations. We were getting him to understand that it’s not the end of the world if he doesn’t get a hamburger. He’s come such a long way. He’s definitely shown lots of improvement over the years for that.
Another thing that people should keep in mind is that, depending on where on the spectrum a person falls, it can be easy for someone to mask being neurodivergent. That’s what happened with Alex. Because his symptoms didn’t usually scream at us but generally only whispered, it was hard to differentiate between growing pains and needing a little bit of extra help.
There are definitely things that Alex does where now we say, “Oh, yeah, he’s doing that because he’s being triggered.” It can happen to anyone, but it is probably more common for those on the spectrum. Things like having a meltdown because he couldn’t get a hamburger. As parents, we brush things off. We think it must be us, or we’re spoiling our kids.
What advice can you give to parents who have recently received a new autism diagnosis for their child?
Mostly to be patient and think outside the box when coming up with solutions. Try a bunch of different ones. You need to try different solutions because your first solution won’t always work. The second solution you pick may not work, either. Just keep your mind open. Talk to your child if you can. Find out what works best for them. But mostly, my advice is to keep an open mind.
Blue Parachute Is Here to Help After a New Autism Diagnosis
Everyone’s journey on the spectrum is different. The path to, during, and getting a diagnosis can be challenging. This is especially true for anyone who is looking to help their child, an adult, or someone they care about whose symptoms of autism spectrum disorder are not as prominent as they are for others. Neurodivergent individuals, their families, researchers, and advocates must work together for a proper diagnosis and treatment plan. In the same way that journeys are all different, remember that one size does not fit all when finding the appropriate treatment.
When it comes to getting help, often, the person with a diagnosis of autism isn’t the only one who can use assistance. There are autism parent support groups, autism support groups for adults, and other autism home support services that can help people learn how to best care for their child or loved one.
Blue Parachute stands by every individual touched by autism spectrum disorder. Whether you have personally been diagnosed with ASD, or you are a parent, an educator, or a concerned community member, our extensive video catalog, crafted by Licensed and Certified Behavior Therapists, is here for you. Following ABA principles, these videos are accessible through flexible subscription pricing, ensuring affordability for all.
For queries on videos or pricing, refer to our FAQ page. You can also reach out via our online contact form. Explore how our videos help provide valuable autism home support services tailored to the needs of you or your loved one.
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Blue Parachute – Who We Help
Blue Parachute – How We Help
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