How to Navigate an ASD Diagnosis
The Impressive podcast is back for a second season! In the first episode, Dr Kimberley O’Brien talks to Jade, whose nine-year-old son Logan is diagnosed with Autism Spectrum Disorder (ASD). Jade shares the long and winding road her family embarked on to obtain an ASD diagnosis.
Dr Kimberley discovers that Logan was bothered by things like food textures and grass from a young age. As he grew older, he struggled to speak clearly and started having emotional outbursts, so Jade sent him to a speech therapist followed by an occupational therapist.
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Jade reveals to Dr Kimberley that she didn’t get the results she hoped for with these therapies, so she decided to have Logan assessed for ASD. After completing an ADOS-2 assessment, including input from his psychologist and OT, Logan was diagnosed with autism.
While the diagnosis wasn’t easy, Jade tells Dr Kimberley that it was a turning point for Logan because he could obtain NDIS funding and the support he needed in school. Since then, he has been much more well-adjusted and successful. Jade now receives phone calls from Logan’s school to tell her how well he’s doing and even that he recently won a technology award.
Dr Kimberley explains that a holistic approach that involved Logan’s parents, teacher, OT and psychologist from the get-go would have benefited him and helped his family obtain a diagnosis earlier. This holistic method is how Quirky Kid approaches any ASD assessment. In addition to using evidence-based assessment tools, Quirky Kid psychologists interview important people in a child’s life to complete a full picture of their behaviour and challenges. Parents can find out more about the ASD assessment process on our website.
What you will learn in this episode:
- The challenges some families face in obtaining an ASD diagnosis
- How to have a child assessed for ASD holistically and efficiently
- How an ASD diagnosis can improve a child’s wellbeing thanks to NDIS funding and school support
- How Quirky Kid can help
See Transcription below under references.
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Dr. Kimberley O'Brien (00:04):
Hello. I'm Dr. Kimberley O'Brien, the principal Child Psychologist at the Quirky Kid Clinic. A child psychology clinic and publishing house. I started this podcast to offer parents and carers some insights into the challenges that I see in our clinic every day. I'm talking about how to manage separation anxiety, supporting high achievers, and how to help your child flourish. I want to give you the tools that you can use straight away to go home put them into practice. Today, we're going to be talking about how to navigate a diagnosis of Autism spectrum disorder. Let's hear about nine year old Logan, recently diagnosed with the Autism spectrum disorder.
Logan is... He's a history buff. He will tell you random facts about something that means nothing to anyone other than him. And he thinks it's the most important thing in the world. And that's just, okay. Hi, my name's Jade. I have two boys and I'm a full-time work in Complex [inaudible 00:01:02].
Dr. Kimberley O'Brien (01:02):
Jade. When did you notice you started to need a little bit of extra help with Logan?
Always from a young age. He was unique, food textures, things couldn't touch each other. Grass, grass was a huge thing for him and his speech because he couldn't get the words out that he wanted, was very difficult when he was young. And that's when we went down the path of speech therapy at first.
Dr. Kimberley O'Brien (01:33):
What's your main concern for Logan?
My main concern is his preparation for adultness. I know that sounds silly, but I'm making sure that he has a normal... I want him to have a job. I want him to have everything that everyone else has.
Dr. Kimberley O'Brien (01:50):
Sounds like around independence and relationships and being able to live independently. Jade. What did you decide to do about it in order to help him? What were your first steps?
Because he had a speech delay, we got a referral to a speech therapist and we worked about eight months going weekly, then fortnightly. And then we probably noticed that his behavior, even with help getting his emotions and things into words, his behavior was still escalating. And then we decided to go to the doctor who went down the road of a pediatrician, and then she signed us to a OT. And we did a few sessions, about maybe six months. And at this stage he was at the end of prep and he wasn't excelling. As in, he wasn't interacting with children. He was still having lots of outbursts. And I actually remember dragging him to school one day. It was horrible. And it was at that point that I was just like, "This is, we've tried OT, we've tried speech. There's something else that I need help with."
So then we went to the paediatrician because they have certain boxes. He didn't actually fit all the boxes at first. Which was really confusing as a parent. You can see your child's not coping with certain situations. And for me, I thought, "Well, maybe it's me." But yeah. And then we went down the road. I can't remember the report that they did on him, but it was a really big report with the psychologist and the OT. And they pretty much said that he ticks most of the boxes that, it always came back to, he didn't tick all the boxes.
Dr. Kimberley O'Brien (03:51):
Sorry to interrupt Jade, but this is for like a Autism spectrum disorder assessment? Is that what...
Yeah, that's what it was. Yeah, is it an ASDOS or something?
Dr. Kimberley O'Brien (03:58):
They had... ADOS.
Dr. Kimberley O'Brien (03:58):
They have all these acronyms and I'm just like, "Ah." But yeah, so we went down that path, which was a very long, like it wasn't, they had to have three sessions here, three sessions there, like it was really evidence based. And the school at that time, he was now grade one and he actually was going to a private school. And my thoughts was, if I throw all the money at his education and that would get him the best help, but that did not work at all. And we had to change schools and his teachers had to do lots of interventions. It was very stressful and yeah, I went to the pediatrician after the 12 months of all these testings and reviews and everything.
And I was just like, "We need to do something. My child's still not being able to cope in situations." And I did everything that the OT recommended, like making sure that he had, like we have a daily board. So these are the things that you have to do before you go to school. And everything's got pictures and his shoes, he always had these issues with his shoes. He could never find his shoes. So we put them in a box at the front door with his name on them. So every day when he gets home from school, he puts them in a box with his name on them and the next day that's where they'll be. So we made all these changes to our routine to help. And yeah, unfortunately there was a lot of long days.
Dr. Kimberley O'Brien (05:43):
Yeah. It sounds to me like you were following all the steps and it was a very long process. And then there wasn't a whole lot of change. I'm thinking at Quirky Kid, at least we often have case conferences, we'll pull together the teacher and the OT and psychologist and make sure that everybody's focusing on the one priority and working in the same way. So that using the same language at home and at school and in the clinic. Just to give it that, super sharp focus and then there's check-ins regularly so that you can make sure you're making progress together. But this case, it sounded like there was some issues with school that you were making some changes at home. But although you were investing in the school, you weren't exactly satisfied. Is that right?
Yeah. For us, I felt like he would just kept getting labeled the "Naughty Kid." There would be daily phone calls that he's ran away or he's refusing to go to this class and he was just in the too hard basket. Well, that's how I felt. I didn't feel like they were... Everything that the recommendations that we were investing at home, they weren't being transferred at school. And yeah, I was under the impression that, because he went to a private school that you pay all this money. And I don't know, I was very naive.
Dr. Kimberley O'Brien (07:02):
And sounds a little bit frustrated and confused about what to do next. So this is often the time when parents will come to the clinic and we will sort of try to help to, almost advocate for them at a case conference to say, "Can you do these things? These are the adjustments that might be helpful." And that's often the time when we find out whether the school's equipped to put those strategies into place or if they need a monthly phone call from the clinic just to give the teacher support as well, because it can be very exhausting and isolating, but in some cases we suggest that parents research other options. And it sounds like that's what you did. You have looked around to see what other schools could offer.
Someone told me that the public school would have better support networks and I thought, "Hmm. Okay, sure." So I went down that route and unfortunately the school that we was going to, didn't have that support. So he moved to a new school when he went into grade two and it was the best decision that we'd ever made as a family. So when we moved to the new school, the SEP teacher was really pushing for Logan to have reviews, daily behaviours. So the teachers would be like, "Morning session, this is what happened." He had a... The biggest thing for me was he kept running away. That was frightening. That was absolutely frightening. And I'd get calls going, "He's left the school grounds." So they would have reviews and the school putting like an emergency. So every staff member knew that if they had seen Logan that this was what you had to do, because if you confronted him, he would just bolt. So they were really supportive. That was a relief for me, because yeah, as a young child, you don't want them running away from a safe environment.
Dr. Kimberley O'Brien (08:55):
Yes. And that's a common trait with kids that are diagnosed with ASD, that they'll run across the car park or just run out of the clinic. Like this is just one of those things, run out the front door. I find a lot of parents are making sure their back gate locked, their front door is locked just because of that lack of awareness of, I guess dangers of cars and different things. So I can imagine that, that would've been very stressful, but brilliant that the school was so supportive because sometimes schools will say that if they can't safely contain the child within the school ground, then it's not the right environment for them. And parents have to keep looking for the appropriate school. So, happy that they were supportive. I wonder if for, so you could talk about having the diagnosis. You said that he was kind of labeled as the naughty kid in the original school, whereas at the second school they're appreciative of the diagnosis. So yeah. Tell us a little bit more about that experience.
Well, I didn't know, it came down to the diagnosis. If you didn't have the ASD diagnosis, you didn't get the funding for the school. I didn't know that. So when he moved to the new school and he had the reports and the paediatrician and the diagnosis, they could get that extra support to be more mindful of Logan's quirks and behaviors and everything like that. They just... I assumed again, naiveness that you just, any school would be like that, but it wasn't the case at all. They had to have the diagnosis and they had to have the support, evidence support to be able to implement the things that they did.
Dr. Kimberley O'Brien (10:39):
And Jade, often we'll see parents at the clinic that receive a diagnosis and then might feel that they're not prepared to give that to the school or that they feel that maybe the child's grandparents or other family members might be judgmental when it comes to a diagnosis. But then we have other parents that do share the diagnosis with friends and family. And then often those friends and family will be really welcoming and wanting that, to set up more play dates and have more social opportunities to keep practicing. Was that your experience or how did you feel about just receiving the diagnosis and then did you share it more broadly, straight away?
No one's ever asked me that question. For me in most circumstances. I don't need to share that with everybody. I didn't, not because I felt judged or embarrassed or anything. It was just that. Yeah. I didn't feel other than the school and obviously his after school activities, like the PCYC and things like that. They needed to be made aware of that to have that support. But my friends and family, I know that my mother-in-law was very pushy regarding the diagnosis, which I understood afterwards, but I didn't beforehand, if that makes sense. And yeah, I know I have friends that don't know that my son has ASD but that it doesn't bother me because even though he's a different kid, he's unique, but he's, yeah. I've never really thought about that, to be honest.
Dr. Kimberley O'Brien (12:10):
I guess it just comes down to, is it relevant to share or not?
Yeah. And sometimes it is and sometimes it's not.
Dr. Kimberley O'Brien (12:17):
Yeah. What about Logan's self-esteem? Was he impacted when you told him about the diagnosis or is that something you'll talk about when he is a bit older?
We've actually always been really honest, even with his younger brother. We talk about how everyone brains work a little bit different. And I know that his younger brother is very... He tells everyone, but not in a negative way. He says, "My brother has Autism. His brain just works a bit different." Which I really appreciate because it's that awareness. Logan is not phased one bit. He just is Logan. He does his thing. He doesn't care if others know that he has ASD. He just does his thing. I know that when he has outbursts, that's when you notice his self-esteem gets really affected. He's just like, "I don't want to be angry. I don't want to be like this." And he goes, he's really hard on himself in that sense. But working with his psychologist, they use this term Elastic Brain and Rock Brain, which has really helped him comprehend when he's in those heightened moments. "I don't need to be like this. I'm using my rock brain. What can I use? What can I do to make the elastic brain work better?" He really, and he even uses those terms.
Dr. Kimberley O'Brien (13:46):
I can hear that like, idea of being more flexible with the elastic, whereas versus being rigid with the rock, which I haven't used those terms before, but I can imagine that, that would be useful in terms of being able to picture. How to be more flexible, like an elastic band. Yeah, and that black and white thinking often feels like a rock. There's just no way of getting any movement, either side.
Yeah. It's been very beneficial and we... It's really good, sometimes he uses it on me, which makes me really appreciative of his awareness. One time I was late for something and I was really like, "Come on, kids get in the car. We really need to go." And he's just like, "Mom, are you using your rock brain right now?" And I was just like, "Oh." It was really refreshing. And me realize that, "Yes, I think I might be late for something, but is it really that important that I need?" It wasn't an appointment. It was just like, "I wanted to be there at this time and I'm not there at this time." So yeah, he used that.
Dr. Kimberley O'Brien (14:50):
Nice. Where's your flexibility?
Dr. Kimberley O'Brien (14:54):
That was exactly, I mean, just made me as a mom. I was just like, "Ugh. Yeah. Thanks."
Dr. Kimberley O'Brien (14:59):
Good point. Thanks Logan. Nice, love that. And Jade, what's been the most helpful in terms of getting support with Logan. Did you try or medication or any other services or things that you felt were a big turning point in the way that things were working for you?
Probably the turning point for us was coordinator at NDIS.
Dr. Kimberley O'Brien (15:20):
She really opened the opportunities up for Logan. We didn't have the first year, so grade one, he didn't have medication, which was still very difficult. We still, but we had all the therapies in place. So go to his psychologist and he went to OT and then last year it escalated his outbursts. So that's when we went down the medication route, I was very apprehensive at start. That wasn't something that I wanted to do. But for Logan, it's made the world a difference, especially in a classroom situation, he's able to really learn. His teachers are also amazing. If you mentioned the word, test to him, he would absolutely freak out. And his teachers actually now break it down into one question, more even like snip the questions. So he could only see one at a time. They really implemented a lot for him, which is amazing. We have such a great relationship with that, but the support network, once he got that diagnosis and he was on the NDIS, just absolutely. It just opened so many opportunities for him.
Dr. Kimberley O'Brien (16:44):
Great. That sounds so refreshing to have all that support for you, rather than searching around, to find out what you need to do next, and then doing all those things and still not get the results, so great that you persevered and finally got that support network that you needed. And it sounds like Logan's now doing really well at school in terms of his focus and also that the teachers are being so supportive so that you don't need to worry. You can go about your day without any phone calls.
It's exactly like that. When the school used to call, you look at your phone and you just have this dread. It really affected me in that sense. I'd be like, "Oh gosh, what's happened now." But now when they call, it's usually, "Oh, he's done this really well." And last week they called to say that he got an award. He got the technology award. And I never had those phone calls before. So as a mom, it made me feel like, every night I always tell him I'm really proud of him. That's how we tuck in. I tell him, "I love him and I'm proud of him." But it makes it really, yeah. It just makes me really proud when the school rings and says, "He's done this really well."
Dr. Kimberley O'Brien (17:49):
Thanks so much Jade for sharing a story that's such a great play to end the podcast for today.
Thank you. And, bye.
Dr. Kimberley O'Brien (17:59):
Thanks Jade for giving us your time today on the topic of Autism spectrum disorder. If you'd like to find out more about assessments, when it comes to Autism spectrum disorder. You can go to the Quirky Kid website to find out about the Autism Diagnostic Observation Scale. Second edition, which is the gold standard in ASD assessments. We can also talk to you about school observations and telephone consults with teachers and how we get the full picture of how kids are functioning before we ever give a diagnosis. In our next episode, we're going to be talking about why it's important to let kids take risks and how we can do that without losing sleep. I'm Dr. Kimberley O'Brien and I'll see you next time.