With guest speaker Dr. Janet Siddiqui, a pediatrician from Johns Hopkins Physicians Odenton, we'll explore different options and approaches for parents who want to screen their child early for Autism Spectrum Disorder, and why it is so important.
Transcript:
Mya Thomas (host): Hi Everyone! Welcome to TheParentPartner, an initiative I started with the intent to equip parents of children with Autism with relevant knowledge, supportive community, and direct guidance in overcoming each learning moment while celebrating every achievement. This month, I wanted to talk about developmental surveillance and early intervention and how that can impact children with Autism and I wanted to give the floor to Dr. Janet Siddiqui who I have with me today! Firstly, thank you so much for coming onto my podcast, and secondly I will give you the floor to introduce yourself.
Dr. Janet Siddiqui: Thanks Mya, it is a real pleasure to be here! I've been with Johns Hopkins for over 25 years. Ever since I left my residency at Georgetown, I've been a pediatrician and the office medical director at Johns Hopkins Community Physicians in Odenton, and we have a good practice here and I've always been passionate about child development and making sure that kids can have the best opportunities that they can have, and that parents have all the resources they can have in terms of that child’s development.
Mya Thomas (host): Alright, thank you so much! To get started I just wanted to ask this question in case there are any parents listening in the pre diagnosis stage, and are just wondering what they should expect from early intervention, and what they should do if they suspect that their child has Autism or any other Neurodevelopmental disability.
Dr. Janet Siddiqui: Yes absolutely, any time a parent is concerned about their child’s development and what's going on they should connect with their pediatrician. There’s research that shows that we can diagnose Autism down to the age of 9 months. The odd thing is that the research shows that the average age for diagnosis of Autism is 4 years, so there's a lot of research and work going on to get that diagnosis at an earlier age. Some of the signs that we see early on have a lot to do with socialization, and how the child is interacting with the mother or the father, and that reciprocal socialization. Are they handing you toys? If something is happening in the room or if someone is upset, are they turning their head? Are they having that emotional connection? Some of the other things are language development. Are they babbling? Are they making progress in terms of their language development? Some other things that can be at any time, sometimes regressive skills that they have adopted, they avoid eye contact and maybe don’t socialize with other children their age, and tend to go off on their own.
They are more attracted to toys that are spinning, or less of that socialization as I mentioned earlier. They sometimes do repetitive behaviors such as rocking or spinning and flapping their hands. Sometimes there are sensory issues, such as extreme reactions to sound, touch, or smells, lights or colors. For any of those things, contact your pediatrician because there's a big spectrum, some kids have mild symptoms and some have more severe symptoms, so we want to make sure they’re getting in right away.
Now, some of the screen tools that we use, and your pediatrician should be asking developmental questions at every single wellness visit. There are some specific validated screening tools we use. One is called SWYC, which is Survey of Wellness in Young Children, which is a screening tool in our office that we can use at any age but we usually use at 9 months and 18 months. There is another one that is called the ASQ which stands for Ages and Stages Questionnaire, and that is typically done at 9 months and 18 months. The specific screening questionnaire for Autism is called MCHAT, and stands for Modified Checklist for Autism in Toddlers. That can be done anywhere between 16 months and 30 months, and at our practice we usually do it at 18 months and between 2 to 2 and a half years. So those are some of the screening tools that we use. There's some resources for parents to really track a child's development. The CDC has a lot of resources, and a program called 'Learn the Signs, Act Early', and there’s an app called CDC Milestone Tracker, which you can get on your phone. For 2 months to 5 years, it tells you what your child should be doing, and there are interactive things to work with your child on, so that’s a really great tool to have.
Mya Thomas (host): Thanks so much! I love that there are so many resources and different modes of screening because I feel like in previous years there’s been less accessibility and there weren't as many types of screening that we could use to detect whether or not a child is diagnosed with Autism, so I think that’s really awesome! I was wondering if you wanted to let any parents know, just in case they were some suspecting that their child has Autism and wanted to hit the ground running in terms of looking for any screening opportunities, if there were any long term benefits that come with early diagnosis and intervention that you wanted to share, and what parents should expect if they are willing to hit the ground running, take their child in to get screened, what should they expect within the process?
Dr. Janet Siddiqui: Absolutely, there's so many benefits to early identification. The earlier the developmental delays are identified, then there’s more opportunities for intervention, and the research shows that kids that have earlier intervention have better outcomes in the long run. The parental involvement and parental support for that makes a big difference as well. It can be a bit overwhelming for parents when their child is not meeting their milestones, thinking “what does this mean?” Talking with your pediatrician and finding the resources that are available in your community are important. There's another screening tool that is recently new in Maryland called RITA-T, the Rapid Interactive Screening Test for Autism in Toddlers, and I think this will be rolling out more to pediatricians over the next year or so. It is for 18 months to 3 years [olds], and it's a more interactive screening tool where the parent is involved, and the developmental screeners will be doing this test as well and hopefully diagnose Autism at an earlier age.
Mya Thomas (host): That’s awesome! And I hope that all parents who are watching this have some sort of insurance plan or something that will help them access these resources, but just in case there are some parents who do no have a steady insurance plan at the moment, will this impact their access to early intervention, or are there other services that they can use without insurance at the moment just to open the door to a screening process prior to them getting steady insurance?
Dr. Janet Siddiqui: There's some programs in the community that do take insurance so that is a benefit, but for most families where we start at is the program through the State Department of Education in Maryland. Each has a program like the Maryland Autism Waiver. So basically from birth all the way to 21 years of age, you can get services at different levels and different times depending on what's going on and what part of the spectrum the child may be on. From birth to 3 years, it is called Infants and Toddlers. Everything through the state, these programs are all free. So usually a parent can self-refer into the Infants and Toddlers program in their county. A pediatrician can refer. So initially the services may or may not be done in the home, or they may go to a center. Then between 3 and 5 years until kindergarten if there’s continued identification of an issue or delay, then the services are done specifically through a school based program and once they are in the school based program then they have an IEP which stands for Individualized Education Program. Those services continue along the child’s school career as long as needed up to 21 [years of age]. There are adult services for Autism as well, and different programs do the autism waiver.
Mya Thomas (host): Awesome! And do you know of any adult programs that you can touch on? I know I heard a little bit about a Best Buddies program that aids Autistic youth and Autistic people who are becoming adults and learning how to gain work experience and stuff like that, so I wanted to ask if you also had any suggestions for that.
Dr. Janet Siddiqui: There are definitely resources through the Maryland State Education Program, for those in terms of job training or continued education going on to community college, all of those supports are in place. I also wanted to touch on, going back to the importance of early intervention, one of the important therapies is the ABA therapy, and getting into that early. You can get that through the private or county services. ABA stands for Applied Behavioral Analysis, and it’s more individual therapy working with a certified therapist with specific cognitive behavioral training that looks at modeling different behaviors and communication skills. That’s one of the best therapies that you want to make sure that your child gets into, ABA therapy either through the county or through the private organization.
Mya Thomas (host): Thank you, I think it's really awesome that there are so many different resources as well and that carries on a bit into their early adult life, so I think that's really great that parents can have a stable team around them whether it comes down to BCBAs through ABA or BTs, or occupational therapists. I think it's really awesome that they can have a team and also rely on the Maryland State Programs to give them the support they need. To wrap it up, I wanted to bring it back to the parents, and ask what they can do in their position to ensure that their child has the best support system moving forward and throughout the rest of their development?
Dr. Janet Siddiqui: Absolutely, make sure you are communicating a lot with your pediatrician and getting the resources that you need. There's a lot of local organizations as well as national organizations like Autism Speaks that support and can also give resources and give you ideas for the support that you need. A lot of these programs also have a lot of parental involvement. Again, it can be overwhelming but it's important that some of the skills that the child may be learning though the ABA therapy, the parent is involved too and can continue those skills at home in terms of working with the child at home so that continuity is there in terms of learning those communication skills or behavioral skills and socialization skills.
Mya Thomas (host): That's really amazing, thank you. And also as a Behavior Tech myself, we do pride ourselves on paying attention to the details of the behavior plan but also listening to parent concerns and figuring out what they want the trajectory of their child’s life to be, and different things that they may do in the home that we may not see. So I think being a parent puts you in a unique position to be a part of the team while also having a different connection to your child than everyone else. You have their best interests in mind and we are here to support that! For the very last bit, I wanted to thank you so much Dr. Siddiqui, and ask if you have any advice for parents going through any stage at this time, any last words you want to give them.
Dr. Janet Siddiqui: The most important thing, which all parents do anyway, is love your child, give them all that you can give of yourself in terms of making sure that they are loved, they have support, and give them all that you can give to make them the best person they can be in the future.
Mya Thomas (host): Thank you so much for coming onto the podcast, and giving these wise words of wisdom and also dropping all of your resources for these parents. I really appreciate it and I hope that any parents watching this found this very helpful, and if you have any questions or feedback, please email TheParentPartnertpp@gmail.com. Thanks again Dr. Siddiqui for coming on.
Dr. Janet Siddiqui: Well, thank you for having me!
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Resources:
Autism Program Planning for Success for Employment (APPS)
CDC's Developmental Milestones List
CDC 'Learn the Signs, Act Early'
Division of Rehabilitation Services (DORS) Pathways to College
Early Years ABA Early Intervention Services
Maryland Infants and Toddlers Program
Vocational Training and Employment Programs for Autistic Individuals
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Comments
This was really informative! Thank you for hosting this conversation and for providing these resources. With so many screening tools available for early detection of autism, how can parents decide which is the best for their child? Especially in the case of having limited or no insurance coverage.
Hi Z, thank you so much for your thoughtful question! I think finding the best tool depends a lot on what the parents can provide, as some of the screening tools such as MCHAT and SYWC are questionnaires that need to be completed by parents. However if parents feel like they do not have all the details about their child’s behaviors, or would rather trust this process to be fully in the hands of a physician, they can seek an intervention plan that relies mostly on clinicians and researchers to assess their child’s behaviors, such as the Autism Diagnosis Observation Schedule (ADOS). There’s a link in the resource section under South Pennsylvania Hospital’s Pediatric Developmental Screening List, where they have different ages that correspond best to certain tests as well! I hope this helped :)