We’re going to go over questions about the beginning of autism. So even if you’re not in the beginning, this might be relevant because a lot of times parents feel like, “Oh, what did I miss? What did I miss?” There’s some piece, and it’s always about reassessing and making sure everything has gotten covered.
What does an autism diagnosis mean for my child’s future development?
It really depends on how you want to think about that. So is that question being asked as a way to justify a limitation? There doesn’t have to be a limitation of your child’s future development. What it means is you’re going to deal with different things. You’re going to have to get really well-informed. You’re going to have to do a lot of extra parenting probably. That’s certainly what I found. There’s parenting, and then there’s autism parenting. So the parents themselves have to just come to an acceptance and be like, “All right, this is going to be different than what I thought. We’re going to rock this! It’s going to be moments of hard, but there’ll also be moments of joy, and I’ll appreciate that joy even more.” There’s definitely all of that.
Autism doesn’t define limits
It doesn’t necessarily mean that your child’s future is limited. I want to make sure that that is clear. An autism diagnosis does not mean game over. It does not mean ‘that’s it, they won’t be able to do certain things’. Not true whatsoever.
37% of kids lose their diagnosis
A really important scientific statistic to know is that the latest research shows 37% of kids with autism lose their diagnosis, and it’s not magically lost. They lose their diagnosis through all the different therapies and interventions and getting healthy and all of those things. So there doesn’t have to be a limit on your child’s future. I want you to know that. I think it’s really important to not limit what we think our kids can do because they will surprise you in the most beautiful ways, and they definitely are growing and learning. So there doesn’t have to be a limitation.
How can I support my child at home after this diagnosis?
Be a safe place
One of the most important ways is to love them and to make sure that they know they can turn to you, and that you’re their safe place. And in many ways, supporting your child who has autism becomes a lot more about parenting with a growth mindset. So if your child has an autism diagnosis, they are going to have different challenges. They might have more challenges than, let’s say, a sibling who doesn’t have an autism diagnosis.
Teach resilience
So how you support them is through teaching them how to be a resilient person. How to be a champion in many ways. Champions have all these different challenges, and a champion doesn’t get things perfect. A champion is about continuing and improving a little bit every day. And it’s really that mindset. So you can support your child at home after the autism diagnosis by really teaching them how to overcome and how to approach problems and how to celebrate success, how to enjoy overcoming something like that.
Those are certainly the ways that you can support your child after a diagnosis that will serve them their entire life. It’s actually beautiful when you can take a step back and say, “All right, my child is going to have challenges. This is how I’m going to have to parent. This is going to be a focus of mine. They’re going to have different challenges. How do I make sure that they learn these skills for life?” That’s the really important part. It really is.
What therapy should I consider starting immediately?
Okay, great question. There’s a lot that can be done.
Health first
The first thing you want to do is really focus on their health, because we all want our kids to to learn, and we want them to speak, and we want them to be curious, and we want them to be engaging, and all of that. But you can’t do that if you’re not feeling good. If you’re constipated, or have diarrhea, or have headaches, or have gas, and bloated, and particular food cravings, all of that, and maybe not sleeping, maybe having meltdowns, transitions are hard.
When you start to look at health, that’s where you want to focus on first. And there’s so much involved in health. So I have something called the Navigating Awetism Matrix. And so if you’re focusing on health, you can focus on, okay, supplements. What are really good basic supplements that a child should be taking?
And then what doctors are really good doctors who focus on improving health? Not every doctor focuses on improving health.
Diet is a huge part. And so really thinking about getting healthy first. That’s the beginning.
You can do it in a variety of different ways. Not everybody has to do it the same way every time. But that’s really the beginning part. How do I get my child to be healthier? And as you get the ball rolling on that, that’s when you get to see some really great natural tendencies for learning or for being curious or for engaging. Then education becomes a lot easier when the child is healthier. So therapy like ABA, therapy like PRT, RDI, and all of these kinds of things can get easier when the child is healthier. So what therapy should I consider starting immediately? It would really be focusing on health, and the health challenges are going to be different for each child, but that’s really the first step.
How do I find the right therapy providers?
In the beginning, a lot of therapy providers are going to give their opinions, and you’re going to start to see, “Okay, certain people say certain things.” You might be sitting there as a parent when someone’s telling you something and you’re like, “Yeah, but that’s not relevant for us. That just doesn’t make sense for us.”
In many ways, it’s frustrating to spend that time to hear something that doesn’t seem relevant, but it helps guide you in the right direction. So sometimes you have to just go through some of that to hear things, and then you get clarity. So it’s not necessarily all a bad thing. As you get more specific, that’s when you could start to say, “All right, my child needs help with X. Now, let me find who specializes in that.” That’s how you would align the symptoms with the therapy, regardless of what it is.
Ask specific questions
Therapy providers, many of them practice a particular way. It’s really important to understand that when you are selecting someone, you have a good idea of what you want from that provider. There’s that back and forth. You want to pick someone who you think can answer your questions.
Now, sometimes you’re not going to know until you go to the appointment. I know it’s annoying like that. Other times, when you’re setting up an appointment, have a list of questions, and you can ask the person at the reception, the person at the front desk, ‘Hey, does so-and-so routinely provide guidance on apraxia? Do they do apraxia assessments?’ You can start to get an assessment of how that person practices before wasting your time and setting an appointment. So that would be the second step.
Once you start to get clarity on what it is that you need, when you start to make the appointment, that’s really where you have that initial dialog. And don’t be concerned if, let’s say, the front desk is not pleasant or stuff like that, especially if you’re paying out of pocket, go find another place. You don’t have to go to every single place that you think is “the place”. The place is going to be where you feel comfortable. And that’s really important to get from the beginning when you’re asking questions.
Trust your instincts
So how do you find the right therapy providers? It’s about knowing what it is that you want, and what it is that your child needs. And then when you’re making appointments, really see, “Okay, can this person help me with what I specifically need?” And ask those questions in the beginning. So then this way, you have a pretty good shot, right? No guarantee, but you have a pretty good shot that you might have found the right person.
What is early intervention and why is it important?
Early intervention is services that start from birth to age three. With early intervention, you don’t necessarily have to have a diagnosis, but you have to have some type of significant milestone delay. Early intervention is like speech therapy, occupational therapy, and physical therapy. There can be some cognitive therapy as well. It really depends on what aspect of development is behind.
Early intervention typically does not cost anything. In the United States, a lot of times the providers are coming to your house, which is very nice. Once the children age out and become four years old and eligible for school services, then those services are provided at daycare, Pre-K, schools, and places like that.
With early intervention, a lot of that intervention is happening in the home, and it’s typically not of a cost, which is also very helpful. There can be significant waits sometimes, but certainly, if there is some type of concern that you have, certainly you want to get as much attention as soon as possible.
And why is it important? It’s important to get started as soon as possible so that you have fewer things to catch up on. So the more time that goes on, the more your child’s peers are advancing, and then that catch-up period becomes more significant. I understand parents who say, “Well, I’m not doing anything, but at least I’m not causing any harm or doing anything that I shouldn’t have done.” I get that, but at the same time, you really want to be taking action. You really want to be doing something wise so that there is momentum in the right direction. Because if you’re not doing anything, then your child is just getting left more and more behind. And I’m sure you’re feeling like, “Oh, my gosh, now we have this to catch up”. And once they get into school and first grade, and they’re sitting at a desk, things just pile up.
So it’s important to do early intervention if possible because you want to get in there and address the issue as soon as possible. There’s no need to wait. I understand trying to figure out the landscape.
If you’re in the beginning stages, you might be interested in the Navigating Awetism platform, which was designed to do just that – “how do I go from not knowing what to do to making sure that I off and assess each absolutely necessary thing.” Start from the beginning and make sure that nothing gets missed. And that’s why it’s important so that you don’t wake up and your child’s 10 and you realize, “Oh, shoot, I didn’t do what I should have done.” It’s so much easier when they’re three, much more difficult when they’re seven and they’re in school and there are parties and holidays and all this junk food and stuff. There’s a benefit in early intervention for a whole variety of reasons.
How can I help my child with communication challenges?
It is very case-independent for me to say this. Let me answer this in the most general way I can. I’m thinking of all the different communication challenges there are, and it’s like, wow, there’s not just one answer. And this is where autism certainly can get frustrating, right? Because it’s like, you can’t just do the same thing that somebody else did exactly and have it work. It’s very individualistic. So it depends on what the challenge is.
Health First
The idea is obviously to get your child to communicate as much as possible, but there are so many different ways. The first aspect is health. So there are a lot of things that can be done from a health standpoint that can impact speech. There are a lot of antibodies in our brains that can influence speech. So blood tests. There’s different toxins that can really impact speech. There’s a lot, from a health standpoint, that can really impact speech. So when you’re thinking about, “What are the challenges?” you want to say, “How much of it is due to health issues that I can somehow impact, I can somehow improve?” And start working on that. As you get there, then you can pivot and say, “All right, let me look at the techniques. Let me look at what is available and what resonates with my child.”
Devices/techniques
So you have AAC, you have a device. Maybe it’s on an iPad or a standalone device. Standalone devices are usually reimbursed with insurance. So there’s a couple of things. There are yes/no apps. There are different technologies. There is a sense of exploration where it’s like, “What works best with my child? What does he resonate with?”
Respect their preferences
This is important because the law in the United States gives those with disabilities the right to choose how they want to communicate. So it’s really important to involve the person with autism in that process of figuring out what is most beneficial for them to communicate. What do they prefer? You can look at things like Spelling to Communicate. You can look at PECS. You want to really give them a choice to see what’s easiest and what they prefer, because that is what has to be respected in school settings. And so if you want someone to communicate, you want them to enjoy the communication way that is being done. Those are the different ways to help with communication challenges.
What role does diet play in autism management, if any?
It plays a huge role. Absolutely huge. So diet is vital, right? We’re taking that stuff and we’re putting it in our body. We become what we eat. I know it’s so cliché, we are what we eat. But it’s so true. Diet plays a huge role in autism. The question was autism management. I don’t really necessarily like that phrase, but what role does diet play in autism? Huge, right? If you want to improve health, you have to understand what you’re eating or what your child’s eating, and really make sure that they’re getting the nutrients that they need so that they can learn, so that their body has those nutrients to function, to grow. These are kids that are growing, so they need nutrition more than us adults for the most part and what you eat is being incorporated in their body for years. So diet plays a huge role. It’s something that most parents really have to address.
Consistency matters
I have seen kids who have lost the autism diagnosis, and their parents didn’t really want to do too much in diet, and it took so much more effort. It took definitely longer than it needed to be. So the stops at McDonald’s really aren’t the best idea. And cheating and things like that. That’s not really something you want to do when you have a goal and you have that time pressure, right? So cheating just is always a few steps back. It’s up to you to decide, “Do I want to take a break and take a few steps back and eat some stuff, or do I want to keep focused and keep going?”
Nowadays, being on special diets and eating healthy, it’s so much more doable than, let’s say, several years ago, because there are really great brands out there of products you can buy that are pre-made, and they do a really good job at that. I certainly want to say that diet does play a huge role in autism, and you want to create that synergy. So when you’re working on diet, and you’re working on health, and you’re working on different things, then it all comes together and goes much faster. So I’ve certainly seen that from personal experience.
How do I handle the overwhelming feeling of the diagnosis?
So I certainly understand this. I was overwhelmed when my daughter was diagnosed. I remember after the appointment, it was at a big hospital, I went to the car, got her in her car seat, I went into the front, and I just cried because I was like, “Oh, my goodness. Wow”. This is a different parenting experience than what I had wanted, than what I had dreamed of. It was just so overwhelming. I, back then, had a lot more limitations in my mind as to what was possible for her than I do now, because I didn’t have as much information back then as I do now. If she was diagnosed now with all the information that I have, Oh, my goodness. Totally different. It would be a completely different experience if I knew what I know now, and I could give myself that. Totally. Oh, my goodness. Completely different. But then I would never be here. Life is the way it is.
Feel and process it
So how you can handle the overwhelming feeling of the diagnosis is first acknowledging it and coming to peace with it. So if it’s something that you always bump up against, and “I hate this autism, and this is so frustrating, and this is…” You’re going to have a period of that, but you’ve got to move through it. So you really want to move those emotions through. And start coming up with a plan, what is it that you want to achieve, and how you want to get there, and move into that take action mode.
Compassion
So definitely have some compassion for yourself because there is that initial overwhelming feeling, and you want to experience it. You want to acknowledge it. You don’t want to tell yourself you’re wrong. You shouldn’t be thinking that because then you’re just beating up on yourself, and that’s never a good thing, right? Life is hard enough. You don’t need to make it harder by beating yourself up.
Create an action plan
So handling the overwhelming feeling of the diagnosis is compassion for yourself in the beginning. And then starting to learn, starting to understand what’s helpful, starting to get quality information. And again, there are two different ways that you can work with me. If you want a second opinion, if you have different lab tests and you just want a strategy or feedback, then certainly look at the second opinion option. Or if you’re like, “Listen, I’m either at the beginning or I feel so spread out that I really want to, in a way, start from the beginning to make sure I’ve covered everything”, then exploring the Navigating Awetism platform would be what would be most appropriate for you to look at.
What should I expect in terms of my child’s social development?
So expecting is hard, right? If you start thinking, “You should be doing this, you should be doing that…’ then that’s where the tension builds, right? Where it’s like, “Oh, my child’s behind….” And that’s where we can limit ourselves.
Avoid limiting beliefs
So much is possible. I think that’s what I would like you to know first. So much is possible. And even if you have people in your life who are giving you those limiting thoughts like, “Oh, you shouldn’t expect him to ever do that. He has autism.” That’s not the person you want to be around. It really isn’t. Your child can do amazing things. You do have to do research. You have to find out what they really need and what will help them flourish. But you can have a child who’s speaking. You can have a child who enjoys the company of others. You could have a child who goes on the debate team or joins the choir or all of these different things, plays football, goes out with the team afterward. All of that can entirely be possible. So don’t limit that expectation. You really want to keep that open mind and know that your child’s social development does not have to be limited, but it does take thoughtfulness. It does take getting to know your child. It does take a lot of time, and it is definitely possible.
