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So your child is on the waitlist, now what? Autism Evaluation waitlists take forever (1-2 years!), but that doesn’t mean you have to be stuck while you wait. Learn how to prepare for your child’s autism diagnosis and what you can do in the meantime. From where to get your child evaluated, to how to get ahead of the waitlist, we make sure you have everything you need to know before Diagnosis Day.
Prepping for D-Day
Show notes for the Embracing Autism Podcast — Ep 102
Introduction
Lia: In this episode, we discuss how to prepare for your child’s autism diagnosis, from where to get your child evaluated, to how to get ahead of the waitlist. We make sure you have everything you need to know before diagnosis day.
Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support, while spreading awareness and acceptance of Autism Spectrum Disorder. I’m Lia!
Matt: And I’m Matt!
Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources, and sharing our personal stories. This is —
Lia & Matt: Embracing Autism!
Discussion
Lia: So in our last episode, we talked about how to identify potential red flags for autism. Now what we’re going to do is take a look at what to do after you’ve identified those red flags and moving forward from there. One of the first things that we did when we found some red flags in our kids is we started getting involved in the local public school system’s Infants and Toddlers program. That is a program that’s specifically catered to infants and toddlers. So I believe they age out around three for that, but then there are additional programs that the public school system does offer for kids that are older. So we looked into it that route, depending upon the age of your child, you might want to look into those programs that are age-dependent. The other option is just to look into the public school, special education department in general and see what resources they have for you.
Those resources are completely free to our U.S. listeners through the public school system funded by the average taxpayer. So when we went and got our child evaluated by the Infants and Toddlers Program, we went online, did a simple Google search, and were able to find that phone number or email address and contacted them. And then they basically let us know that they would be able to evaluate our child within about two weeks at the time. And once they got evaluated by them, they were able to give us kind of an initial, ‘we think she may have some red flags for autism’. Some of the things that they will evaluate are developmental milestones. So they took a look at her fine motor skills and some of her gross motor skills. They took a look at her speech development, language development, that sort of thing. And then based off of some magical algorithm that they have, that I don’t really understand. They were able to basically make a recommendation and say, okay, yeah, your child is distributing enough flags that we think it’s worth it for you to go forward and try to schedule some sort of appointment with a Developmental Pediatrician.
Matt: Now, the route that you take is actually heavily dependent on your insurance, to tell you the truth. So you’ll need to call up your insurance to see if they will require a referral or if they don’t need a referral. In the case that you need a referral, you would have to make an appointment with your Primary Care pediatrician and they bring you in. And I think this is around the 18-month mark, that they generally check for this type of diagnosis. They would have you fill out a M-CHAT. It’s a kind of a series of questions to see some of the characteristics that are common and indicative of autism. In which case they would refer you to a Developmental Pediatrician. Now, the other route and kind of the shorter route is if your insurance does not require a referral you would just go directly to the Developmental Pediatrician. And that can be completed by just a phone call to a children’s hospital or an autism center, or in some cases, the children’s hospital that has an autism center in it. And that’s kind of first getting started and basically getting you on the waitlist.
Lia: Now, the other thing to consider is that this is specifically if we’re talking about a younger child. So that was the case with our child because our children were both under two. If you have an older child, again, as we mentioned in the last episode, you may want to go the Neuropsychologist route rather than the Developmental Pediatrician route. A Neuropsychologist can basically go from childhood through adulthood. So there are a couple of different professionals that you can take a look at to get that diagnosis. Now, after you have gotten the referral, if you needed one, or if you didn’t need a referral and you’ve decided to move forward with getting an appointment scheduled, there’s a couple of recommendations that we make. My biggest recommendation here is in the process. When you go to apply for an appointment, make sure that you are applying to multiple appointments, particularly if you’re going for the Developmental Pediatrician. And what I mean by this is right now, the standard waitlist in the US for an autism evaluation with a Developmental Pediatrician is about one to two years long. I believe the shortest is usually six months, but the standard is that it is one to two years wait. Now, this is something that a lot of parents don’t expect. So it’s one of the most shocking things that people run into when it comes to an autism evaluation, but there’s a few things that you can do to mitigate that. And one of the things that we did that I highly highly recommend is, again, as I mentioned before, apply to multiple locations. We applied for our child’s evaluation to two different children’s hospitals. If there were more in our area, I would have done more, but that gives you kind of some leverage to be able to get in a little sooner.
Matt: And I would just kind of jump in real quick to this thought is the reason that you would apply to more is just, obviously, if they’re able to clear you in one avenue faster than the other, you would just go with that one and then you could easily cancel the other appointment that’s lagging behind, which is what we did in our case. They were able to get us into one of the autism centers much faster, and we’re easily able to cancel the other appointment that wouldn’t have come up for another six to eight months.
Lia: Right. And to go with that as well, when we first signed her up for an appointment, we weren’t sure if maybe the outcome of that evaluation would be like a borderline result where they weren’t sure if they had autism or not. So we were kind of holding onto it as well. We could get a second opinion just in case we needed a second opinion and you’d already be on that waitlist. So you wouldn’t have to start the waiting process all over again and wait another year. So I would highly recommend that when you’re setting up appointments for your child, you definitely apply to more than one waitlist at more than one location. The other recommendation that we make, and this is kind of like our, our secret weapon of how we got evaluated so quickly. So in our first episode, we essentially were talking about how our child was able to get evaluated within what was it, a month or so?
Matt: It was about two or three.
Lia: Yeah. So we got our child evaluated within two or three months of being put on the waitlist. And at that time we were told that the waitlist was about a year long. Now, the way that we are able to do this is — biggest trick, biggest tip — call them. So what I did is I started calling them weekly, once a week. It may seem like a lot, but it works. Once a week I would call them very politely, not harassing them, just asking them, ‘Hey, did you happen to have any appointment cancellations coming up?’ And the good thing is a lot of people actually do cancel their appointments. When people cancel their appointments, you can basically say, ‘You know what? I can drop everything I’m doing right now and I can be there tomorrow’. I know with our institution, they had a specific policy where there’s a shortlist waiting list. And on that shortlist, they basically would say, ‘are you comfortable with dropping everything you have and going to an appointment the very next day?’ If you are then get on that waitlist and then you would be seen much quicker.
Matt: And I’d like to add in, this kind of goes in line with paying it forward a little bit. If you are able to beat the list and get in much sooner than expected, please call ahead and cancel whatever appointment you had so another individual who is going through the same process, but a couple of months behind you, may be able to get in earlier for theirs as well. Because we had two slots locked for both our institutions and because we were able to get in so fast, we were able to cancel the other appointments in which case another family was able to hopefully get their child diagnosed sooner as well.
Lia: Right, Although I only recommend that for people who have a very obvious diagnosis where it was a clear cut case, that yeah, we’re very confident that your child does or does not have autism. If your child is one of those borderline cases, I would actually recommend that you keep the second diagnosis evaluation and get a second opinion. So that will be dependent upon the outcome of your appointment. But that’s a good point. So essentially once we went ahead and called weekly, I was able to get ahold of somebody who said, ‘yes, this person canceled. Are you willing to come in in the next two days to get this evaluation done?’ I basically said, ‘yes, I’ll drop everything. I’ll do it’. And because of that, we were able to get scheduled. Within just a couple of weeks, we were already scheduled in the books. And then we actually got the evaluation within a couple of months of just being placed on the waitlist.
Matt: Right after Infants and Toddlers came and said we had some red flags, within a couple of months, we were already getting the diagnosis for our daughter. So that was fantastic. If you do have to wait longer, I think there are a number of handful, helpful things that you’re able to do. So you’re not basically just sitting, waiting for the appointment. And I think one of the big things that we both agreed upon that were incredibly helpful for us is the Infants and Toddlers program. We would meet with them, I think on a Bi-monthly schedule. And while you’re on the waitlist, there are additional things that you’re able to do in the meantime. So if your child is under five years old, I think that’s the cutoff, you would look into Infants and Toddlers to get started and to try and lean on for the resources that you would need during that time. If your child is older than five, you’re looking more at the public school system or social workers to get in touch with. So basically what they’re going to do is they’re going to give you the resources, perhaps a parent support group and a therapist that you would meet with and they would help you come up with a plan for your child and get them moving forward even before you have a chance to see the Developmental Pediatrician.
Lia: The other thing that the public school special education system will do is they might offer you some sort of training, parent training resources to help you get educated on autism, or just whatever your child is struggling with if that’s a language delay or something like that. They also provide specific resources from your specific community. So if your specific community has particular grants or if your particular community has a specific club for autism or something like that, that’s something that your social worker and public school education system would probably have access to or information about and they’d be able to give you that information.
Matt: Because our daughter was under three, we were able to use the Infants and Toddlers program. So basically what that is, a real quick overview is we had a speech pathologist who would come to our residents whenever we’d schedule it. Usually, it was about twice a month and she was able to provide us with resources, a parent support group, and additional therapists, such as Occupational Therapist and a Physical Therapist as we requested. And they were able to provide additional supports for our daughter at that time.
Lia: Okay. So we covered everything that you need to know about diagnosis day, but there’s a couple of tips that we’ve got in terms of preparation. One of the things that I highly recommend you do is put a list together of your observations of your child’s behavior and anything that you’ve noticed that has kind of raised your suspicions, all those things that you’ve observed your child do or say that has kind of put the thought of autism in your mind, make sure you know as many specific examples as possible because these will be used in the interview portion to assess for potential autism. I can remember, for example, my kid would get hurt because of some of the stimulatory behaviors that she would have. So if you have anything like that, just try to write down as much as you could possibly remember, and be as specific as possible so that you can bring it to the appointment. That will help you with the interview portion of the diagnosis day because they will ask you questions about specific incidents.
Matt: And I thought another important element that we focused on was also having a support person there with you. So this actually works on two different levels — a practical level and also an emotional level. So our daughter was kind of a runner, and actually still is, where she would get into trouble, not really knowing where her surroundings are. So with having an extra set of hands, it can alleviate some of the stress on that day. They’re also able to manage some of the smaller things. So I would definitely recommend not going to the appointment alone. I would definitely bring someone just to help you out with carrying things, getting to where you’re going, changing diapers, any of the practical things that you kind of run into along the day. And then the other area is the emotional element for that day. So you might be having a lot of mixed emotions, not really sure what to expect with the appointments that you’re going to have that day. You might have a little bit of anxiety and it just helps to have another person that is going through a similar situation with you to be able to bounce ideas off of, just talk through your emotions and kind of come to terms a little bit with what you’re feeling and where some of these feelings are coming from.
Lia: Everybody deals with this in a different way. So some people will be leaning more towards needing that emotional support. Some people may not need that emotional support as much. I know for me personally, I’m very much so in the emotional support arena and I’m the type of person that if I’m going to be going to a heavy appointment, I need somebody else to drive me home because I’m going to be processing everything in my mind and I’m not going to be paying attention to the road. So really just gauge yourself and how comfortable you are with these sorts of things and how you personally handle this stuff. And if you need that, go for it. If you don’t, then you can skip out on that. But that’s just a personal recommendation from us and what we found that we needed at that time.
The other thing that I would highly recommend is to kind of help ease with that anxiety of the unknown is just something as simple as doing something fun the night before. Take your kid and play some fun activity, watch a movie, do something silly, go out for ice cream, like just do something to kind of relax and help you prepare emotionally. Because like I said before, it is very normal for this to be an emotional process for a lot of people. So it’s really just kind of an icebreaker for yourself. Just give yourself a moment to reset and recharge and make sure that you are taking time to relax the night before. Make sure your child is getting a full night’s sleep. Because especially if they’re younger, but even the older kids, they’re going to have to have their attention set on these tasks and activities for a one to potentially two-day evaluation. Our evaluation was a two-day evaluation. That’s a lot of time for a kid to be sitting down, being told to — you know, really it’s just play — but to be told to do something for a consistent amount of time. They need a break and they need a way to relax and they need to have all the energy that they can. So make sure your kid is well rested the night before you’re well-rested, depending upon where you’re having the appointment, I would also highly recommend that you get a hotel.
Matt: It was probably about a two-hour drive to the facility that we were getting evaluated. We live in between the two metropolitan areas and our appointment was on a weekday. So we didn’t want to take the chance of driving, trying to drive up in the morning during rush hour. If there’s an accident, she misses her appointment and we’re back on the waitlist for who knows how long. So yeah, I think for us, the best option was just to get a hotel which allowed our children to sleep in a little bit longer. We didn’t have to wake them up as early and she was better rested for the appointment and had a better day I think overall.
Lia: The other reason I highly recommend booking a hotel is even if you live close to the appointment location if you’re going with a younger child in particular that still takes naps, this is going to completely mess with their schedule so we recommend being close to a hotel where you can take a nap break in between appointments. Because for us at least, we did have breaks between appointments. So there was probably about a one to two-hour break between each appointment. So we utilized that time to go back to the hotel and make sure that our kids had a little bit of a nap, a snack, something like that. If your kids are older, they might just need a sensory break. So they might just need to go to a safe space and just relax for an hour or two between appointments. I would highly recommend considering looking into some sort of hotel or motel, or even if you have a friend who lives in the area, maybe they let you crash at their place for a little bit, but definitely have some sort of base camp that you can go to and touch base.
Matt: At the end of the day, a diagnosis, if your child is autistic or not autistic, doesn’t really change who they are as a person. This basically just gives you a better way to assist them for the future — finding areas that you can strengthen or that they might be struggling in and give them better assistance in the future.
Lia: Right? Adiagnosis is not the end of the world. There are some parents who really struggle with the diagnosis of autism, but it’s just a matter of seeing it as a potential opportunity to open some doors for your child. If your child does receive a diagnosis that opens them to some therapeutic possibilities that weren’t available before, and it’s really kind of a turning point for them in terms of being able to get them the help they need. It really is something that can be overwhelming for parents going through this for the first time who just don’t know what autism is. I just want to basically reiterate having Autism Spectrum Disorder is not this horrendous thing or end of the world scenario, your child is still the same person they were before. Nothing has changed. Just keep that in mind and just remember that child that you had and remember that that’s not going to change. If you get a diagnosis, you’re not walking out the door with something completely different. You’re just walking out the door with information that you can use to utilize and assist your child in a better way. With that, just take a deep breath, relax and rest assured, it’s going to be fine. And we’re going to help you out with that journey as much as we can with future episodes to review.
Outro
Lia: In this episode, we discussed how to shorten your child’s time on the waitlist by calling in weekly for canceled appointments, as well as how to make evaluation date easier for you and your child with snacks, toys, a list of concerns, and a support person.
Lia: Thanks for listening to Embracing Autism tune in to our next episode, where we discuss diagnosis day and answer questions such as what can I expect at the appointment? What will my child be asked to do? And will I leave the appointment with a diagnosis for my child? See you next time on Embracing Autism.
–
References
What is “Early Intervention” and is my child eligible?
M-CHAT™ – Autism Screening – The Modified Checklist for Autism in Toddlers
Neuropsychologist – Testing for Autism
Show notes for the Embracing Autism Podcast — Ep 102
Introduction
Lia: In this episode, we discuss how to prepare for your child’s autism diagnosis, from where to get your child evaluated, to how to get ahead of the waitlist. We make sure you have everything you need to know before diagnosis day.
Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support, while spreading awareness and acceptance of Autism Spectrum Disorder. I’m Lia!
Matt: And I’m Matt!
Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources, and sharing our personal stories. This is —
Lia & Matt: Embracing Autism!
Discussion
Lia: So in our last episode, we talked about how to identify potential red flags for autism. Now what we’re going to do is take a look at what to do after you’ve identified those red flags and moving forward from there. One of the first things that we did when we found some red flags in our kids is we started getting involved in the local public school system’s Infants and Toddlers program. That is a program that’s specifically catered to infants and toddlers. So I believe they age out around three for that, but then there are additional programs that the public school system does offer for kids that are older. So we looked into it that route, depending upon the age of your child, you might want to look into those programs that are age-dependent. The other option is just to look into the public school, special education department in general and see what resources they have for you.
Those resources are completely free to our U.S. listeners through the public school system funded by the average taxpayer. So when we went and got our child evaluated by the Infants and Toddlers Program, we went online, did a simple Google search, and were able to find that phone number or email address and contacted them. And then they basically let us know that they would be able to evaluate our child within about two weeks at the time. And once they got evaluated by them, they were able to give us kind of an initial, ‘we think she may have some red flags for autism’. Some of the things that they will evaluate are developmental milestones. So they took a look at her fine motor skills and some of her gross motor skills. They took a look at her speech development, language development, that sort of thing. And then based off of some magical algorithm that they have, that I don’t really understand. They were able to basically make a recommendation and say, okay, yeah, your child is distributing enough flags that we think it’s worth it for you to go forward and try to schedule some sort of appointment with a Developmental Pediatrician.
Matt: Now, the route that you take is actually heavily dependent on your insurance, to tell you the truth. So you’ll need to call up your insurance to see if they will require a referral or if they don’t need a referral. In the case that you need a referral, you would have to make an appointment with your Primary Care pediatrician and they bring you in. And I think this is around the 18-month mark, that they generally check for this type of diagnosis. They would have you fill out a M-CHAT. It’s a kind of a series of questions to see some of the characteristics that are common and indicative of autism. In which case they would refer you to a Developmental Pediatrician. Now, the other route and kind of the shorter route is if your insurance does not require a referral you would just go directly to the Developmental Pediatrician. And that can be completed by just a phone call to a children’s hospital or an autism center, or in some cases, the children’s hospital that has an autism center in it. And that’s kind of first getting started and basically getting you on the waitlist.
Lia: Now, the other thing to consider is that this is specifically if we’re talking about a younger child. So that was the case with our child because our children were both under two. If you have an older child, again, as we mentioned in the last episode, you may want to go the Neuropsychologist route rather than the Developmental Pediatrician route. A Neuropsychologist can basically go from childhood through adulthood. So there are a couple of different professionals that you can take a look at to get that diagnosis. Now, after you have gotten the referral, if you needed one, or if you didn’t need a referral and you’ve decided to move forward with getting an appointment scheduled, there’s a couple of recommendations that we make. My biggest recommendation here is in the process. When you go to apply for an appointment, make sure that you are applying to multiple appointments, particularly if you’re going for the Developmental Pediatrician. And what I mean by this is right now, the standard waitlist in the US for an autism evaluation with a Developmental Pediatrician is about one to two years long. I believe the shortest is usually six months, but the standard is that it is one to two years wait. Now, this is something that a lot of parents don’t expect. So it’s one of the most shocking things that people run into when it comes to an autism evaluation, but there’s a few things that you can do to mitigate that. And one of the things that we did that I highly highly recommend is, again, as I mentioned before, apply to multiple locations. We applied for our child’s evaluation to two different children’s hospitals. If there were more in our area, I would have done more, but that gives you kind of some leverage to be able to get in a little sooner.
Matt: And I would just kind of jump in real quick to this thought is the reason that you would apply to more is just, obviously, if they’re able to clear you in one avenue faster than the other, you would just go with that one and then you could easily cancel the other appointment that’s lagging behind, which is what we did in our case. They were able to get us into one of the autism centers much faster, and we’re easily able to cancel the other appointment that wouldn’t have come up for another six to eight months.
Lia: Right. And to go with that as well, when we first signed her up for an appointment, we weren’t sure if maybe the outcome of that evaluation would be like a borderline result where they weren’t sure if they had autism or not. So we were kind of holding onto it as well. We could get a second opinion just in case we needed a second opinion and you’d already be on that waitlist. So you wouldn’t have to start the waiting process all over again and wait another year. So I would highly recommend that when you’re setting up appointments for your child, you definitely apply to more than one waitlist at more than one location. The other recommendation that we make, and this is kind of like our, our secret weapon of how we got evaluated so quickly. So in our first episode, we essentially were talking about how our child was able to get evaluated within what was it, a month or so?
Matt: It was about two or three.
Lia: Yeah. So we got our child evaluated within two or three months of being put on the waitlist. And at that time we were told that the waitlist was about a year long. Now, the way that we are able to do this is — biggest trick, biggest tip — call them. So what I did is I started calling them weekly, once a week. It may seem like a lot, but it works. Once a week I would call them very politely, not harassing them, just asking them, ‘Hey, did you happen to have any appointment cancellations coming up?’ And the good thing is a lot of people actually do cancel their appointments. When people cancel their appointments, you can basically say, ‘You know what? I can drop everything I’m doing right now and I can be there tomorrow’. I know with our institution, they had a specific policy where there’s a shortlist waiting list. And on that shortlist, they basically would say, ‘are you comfortable with dropping everything you have and going to an appointment the very next day?’ If you are then get on that waitlist and then you would be seen much quicker.
Matt: And I’d like to add in, this kind of goes in line with paying it forward a little bit. If you are able to beat the list and get in much sooner than expected, please call ahead and cancel whatever appointment you had so another individual who is going through the same process, but a couple of months behind you, may be able to get in earlier for theirs as well. Because we had two slots locked for both our institutions and because we were able to get in so fast, we were able to cancel the other appointments in which case another family was able to hopefully get their child diagnosed sooner as well.
Lia: Right, Although I only recommend that for people who have a very obvious diagnosis where it was a clear cut case, that yeah, we’re very confident that your child does or does not have autism. If your child is one of those borderline cases, I would actually recommend that you keep the second diagnosis evaluation and get a second opinion. So that will be dependent upon the outcome of your appointment. But that’s a good point. So essentially once we went ahead and called weekly, I was able to get ahold of somebody who said, ‘yes, this person canceled. Are you willing to come in in the next two days to get this evaluation done?’ I basically said, ‘yes, I’ll drop everything. I’ll do it’. And because of that, we were able to get scheduled. Within just a couple of weeks, we were already scheduled in the books. And then we actually got the evaluation within a couple of months of just being placed on the waitlist.
Matt: Right after Infants and Toddlers came and said we had some red flags, within a couple of months, we were already getting the diagnosis for our daughter. So that was fantastic. If you do have to wait longer, I think there are a number of handful, helpful things that you’re able to do. So you’re not basically just sitting, waiting for the appointment. And I think one of the big things that we both agreed upon that were incredibly helpful for us is the Infants and Toddlers program. We would meet with them, I think on a Bi-monthly schedule. And while you’re on the waitlist, there are additional things that you’re able to do in the meantime. So if your child is under five years old, I think that’s the cutoff, you would look into Infants and Toddlers to get started and to try and lean on for the resources that you would need during that time. If your child is older than five, you’re looking more at the public school system or social workers to get in touch with. So basically what they’re going to do is they’re going to give you the resources, perhaps a parent support group and a therapist that you would meet with and they would help you come up with a plan for your child and get them moving forward even before you have a chance to see the Developmental Pediatrician.
Lia: The other thing that the public school special education system will do is they might offer you some sort of training, parent training resources to help you get educated on autism, or just whatever your child is struggling with if that’s a language delay or something like that. They also provide specific resources from your specific community. So if your specific community has particular grants or if your particular community has a specific club for autism or something like that, that’s something that your social worker and public school education system would probably have access to or information about and they’d be able to give you that information.
Matt: Because our daughter was under three, we were able to use the Infants and Toddlers program. So basically what that is, a real quick overview is we had a speech pathologist who would come to our residents whenever we’d schedule it. Usually, it was about twice a month and she was able to provide us with resources, a parent support group, and additional therapists, such as Occupational Therapist and a Physical Therapist as we requested. And they were able to provide additional supports for our daughter at that time.
Lia: Okay. So we covered everything that you need to know about diagnosis day, but there’s a couple of tips that we’ve got in terms of preparation. One of the things that I highly recommend you do is put a list together of your observations of your child’s behavior and anything that you’ve noticed that has kind of raised your suspicions, all those things that you’ve observed your child do or say that has kind of put the thought of autism in your mind, make sure you know as many specific examples as possible because these will be used in the interview portion to assess for potential autism. I can remember, for example, my kid would get hurt because of some of the stimulatory behaviors that she would have. So if you have anything like that, just try to write down as much as you could possibly remember, and be as specific as possible so that you can bring it to the appointment. That will help you with the interview portion of the diagnosis day because they will ask you questions about specific incidents.
Matt: And I thought another important element that we focused on was also having a support person there with you. So this actually works on two different levels — a practical level and also an emotional level. So our daughter was kind of a runner, and actually still is, where she would get into trouble, not really knowing where her surroundings are. So with having an extra set of hands, it can alleviate some of the stress on that day. They’re also able to manage some of the smaller things. So I would definitely recommend not going to the appointment alone. I would definitely bring someone just to help you out with carrying things, getting to where you’re going, changing diapers, any of the practical things that you kind of run into along the day. And then the other area is the emotional element for that day. So you might be having a lot of mixed emotions, not really sure what to expect with the appointments that you’re going to have that day. You might have a little bit of anxiety and it just helps to have another person that is going through a similar situation with you to be able to bounce ideas off of, just talk through your emotions and kind of come to terms a little bit with what you’re feeling and where some of these feelings are coming from.
Lia: Everybody deals with this in a different way. So some people will be leaning more towards needing that emotional support. Some people may not need that emotional support as much. I know for me personally, I’m very much so in the emotional support arena and I’m the type of person that if I’m going to be going to a heavy appointment, I need somebody else to drive me home because I’m going to be processing everything in my mind and I’m not going to be paying attention to the road. So really just gauge yourself and how comfortable you are with these sorts of things and how you personally handle this stuff. And if you need that, go for it. If you don’t, then you can skip out on that. But that’s just a personal recommendation from us and what we found that we needed at that time.
The other thing that I would highly recommend is to kind of help ease with that anxiety of the unknown is just something as simple as doing something fun the night before. Take your kid and play some fun activity, watch a movie, do something silly, go out for ice cream, like just do something to kind of relax and help you prepare emotionally. Because like I said before, it is very normal for this to be an emotional process for a lot of people. So it’s really just kind of an icebreaker for yourself. Just give yourself a moment to reset and recharge and make sure that you are taking time to relax the night before. Make sure your child is getting a full night’s sleep. Because especially if they’re younger, but even the older kids, they’re going to have to have their attention set on these tasks and activities for a one to potentially two-day evaluation. Our evaluation was a two-day evaluation. That’s a lot of time for a kid to be sitting down, being told to — you know, really it’s just play — but to be told to do something for a consistent amount of time. They need a break and they need a way to relax and they need to have all the energy that they can. So make sure your kid is well rested the night before you’re well-rested, depending upon where you’re having the appointment, I would also highly recommend that you get a hotel.
Matt: It was probably about a two-hour drive to the facility that we were getting evaluated. We live in between the two metropolitan areas and our appointment was on a weekday. So we didn’t want to take the chance of driving, trying to drive up in the morning during rush hour. If there’s an accident, she misses her appointment and we’re back on the waitlist for who knows how long. So yeah, I think for us, the best option was just to get a hotel which allowed our children to sleep in a little bit longer. We didn’t have to wake them up as early and she was better rested for the appointment and had a better day I think overall.
Lia: The other reason I highly recommend booking a hotel is even if you live close to the appointment location if you’re going with a younger child in particular that still takes naps, this is going to completely mess with their schedule so we recommend being close to a hotel where you can take a nap break in between appointments. Because for us at least, we did have breaks between appointments. So there was probably about a one to two-hour break between each appointment. So we utilized that time to go back to the hotel and make sure that our kids had a little bit of a nap, a snack, something like that. If your kids are older, they might just need a sensory break. So they might just need to go to a safe space and just relax for an hour or two between appointments. I would highly recommend considering looking into some sort of hotel or motel, or even if you have a friend who lives in the area, maybe they let you crash at their place for a little bit, but definitely have some sort of base camp that you can go to and touch base.
Matt: At the end of the day, a diagnosis, if your child is autistic or not autistic, doesn’t really change who they are as a person. This basically just gives you a better way to assist them for the future — finding areas that you can strengthen or that they might be struggling in and give them better assistance in the future.
Lia: Right? Adiagnosis is not the end of the world. There are some parents who really struggle with the diagnosis of autism, but it’s just a matter of seeing it as a potential opportunity to open some doors for your child. If your child does receive a diagnosis that opens them to some therapeutic possibilities that weren’t available before, and it’s really kind of a turning point for them in terms of being able to get them the help they need. It really is something that can be overwhelming for parents going through this for the first time who just don’t know what autism is. I just want to basically reiterate having Autism Spectrum Disorder is not this horrendous thing or end of the world scenario, your child is still the same person they were before. Nothing has changed. Just keep that in mind and just remember that child that you had and remember that that’s not going to change. If you get a diagnosis, you’re not walking out the door with something completely different. You’re just walking out the door with information that you can use to utilize and assist your child in a better way. With that, just take a deep breath, relax and rest assured, it’s going to be fine. And we’re going to help you out with that journey as much as we can with future episodes to review.
Outro
Lia: In this episode, we discussed how to shorten your child’s time on the waitlist by calling in weekly for canceled appointments, as well as how to make evaluation date easier for you and your child with snacks, toys, a list of concerns, and a support person.
Lia: Thanks for listening to Embracing Autism tune in to our next episode, where we discuss diagnosis day and answer questions such as what can I expect at the appointment? What will my child be asked to do? And will I leave the appointment with a diagnosis for my child? See you next time on Embracing Autism.
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References
What is “Early Intervention” and is my child eligible?
M-CHAT™ – Autism Screening – The Modified Checklist for Autism in Toddlers
Neuropsychologist – Testing for Autism
