Hi! SO thankful for the community of understanding, smart parents. My son (7- second grade) has been diagnosed with ADHD for a year now, and last week we got an official diagnosis of high-functioning autism (level 1) as well. I know that we are in many ways lucky- his autism is so mild that it's almost possible to write it off as "quirkiness". I have to admit though that it's hard to hear this news in some ways...and yet it's a relief in other ways- it explains things we didn't understand up until now, and gives us access to more resources through the school. I was wondering:
- if any other parents have been through this diagnosis. If so, what/how do you explain to your kid? We've been very open to him about his ADHD, but this feels like harder to put in kid-friendly terms some how. Maybe because it's so new to us?
-Were you prescribed/recommended ssri's on top of the adhd meds like we were? We haven't decided to fill the rx on that yet- feels like too many drugs for a kid who's still developing when his meltdowns are really pretty infrequent right now. For those who use ssris, what has your experience been?
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beemom
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Hi Beemom, I’m wondering how you came about the diagnosis. I have suspected that my son has high-functioning autism for a long time but when he was diagnosed with ADHD I went with it in part I think because it carries less stigma in some ways. But my son is struggling socially so badly and I can not get the school to help him. Your post is so timely because today for the first time I actually voiced my concern out loud to my therapist. Now I am not sure where to start (over) with diagnosis. We have had zero support from his school because his behaviors cause more trouble for him than anyone else and he does great academically. Anyway, sorry to ask questions rather than answer yours but this has been heavy in my thoughts today.
Hi- His teacher in his old district had suspicion of this but couldn't come right out and say it (they have rules of what a teacher can say to parents about diagnosis stuff) -she sort of hinted we should get him evaluated. I myself had researched many times since he was in pre-k but he never met enough of the criteria from what I could tell. His pediatrician didn't think it warranted an exam. But when we met his new therapist, she basically told me right away that in her long experience with autism, she thought he was on the spectrum. I then booked an appointment with a pediatric psychiatrist who formally diagnosed him after an hour and a half long exam/history intake. I know there are much longer evals that people get, but honestly, this doctor was excellent, very experienced, and really knew his stuff. He pointed out things to me that I'd not noticed. He told us that in the past he'd call it Asperger's, but since that's not a thing anymore it'd be high-functioning autism. Just looking at my son's behaviour through the lens of new people has helped me see some signs that I'd written off before.
Hi, can I ask what symptoms did the doctor notice? School is sending my son for an evaluation... He has adhd but they are looking for more... What should I look for in his behaviors that would indicate asd ?
It's funny because so much of them overlap with some of the adhd stuff.
One of the biggest is he will get obsessed about something- right now it's Captain Underpants and Legos- and will try to turn any and all conversations to include those things. Like, you are playing dinosaurs, and whoops, here comes Captain Underpants to join them. He doesn't notice or particularly care when others are annoyed by this. He will talk endlessly and ask endless questions about his interest without caring whether the person to whom he's speaking is giving every sign they are tired of talking about that thing (perseverating). He has a very hard time regulating his volume- he speaks in a loud voice. He avoids eye contact (this one was hard for me to see because he looks me in the eye, but with strangers he's different). He needs a lot of peoples feelings about things explained to him- like he wont get how saying something might be hurtful. He is sensitive to textures and tastes, and tends to avoid touching new people (like if a not-all-that-close relative asks for a hug, he'll sort of back into them rather than really hug.
The hard thing for us as far as recognizing it earlier is there's plenty of asd things he doesn't do- he doesn't mind changes in routine, for example. He's got a strong sense of humor and shows a full range of emotion. He doesn't stim. He's had a stammer that seems to come and go but never a delay in speech. So it was hard to put together a full picture, especially once adhd seemed to explain away a lot of his stuff.
You can make a formal written request to the school to evaluate for autism. By law, if your child is going to a public school they must evaluate him. You can go online and find template letters on how to structure your request. The school should respond back by 15 days with a testing schedule/plan per your approval. Some parents have a private diagnosis done before the school evaluation request is made as proof of need of evaluation for school services. You can get a private diagnosis from a developmental pediatrician or a psychologist.
I have read both your posts. I have a step-son who is also described as having high functioning Autism. I’ve known him since he was 2 years old and he’s now 18. As a result I’ve also seen many many parents go through the various struggles and dilemas with their children. SO many thoughts to share as a result - and so little space to write. So I hope my thoughts do not seem like too much to take in when you have both so recently received diagnoses. It takes time to come to terms with the diagnosis and the pervasive depth of it only reveals itself over time, as other nuerotypical kids develop on a typical path, and what does not seem like a big deal in a younger child becomes more and more obvious.
Here’s what I’ve seen from ours and many others experiences. I urge you also to read about parenting with Autism and what to expect.
Being able to memorize facts, is not the same as being good academically. As studies get harder, the point of education is applying that knowledge to problem solving. That is a huge leap, and one of the chief imparements of Autism.
Inability to read peers social queues, as kids become more sophisticated, can be very irritating to them and the kids with Autsim often suffer from bullying at worst, or social isolation
As the gaps widen - the aspiration idea of integrating into a normal school becomes painfully difficult. This is one of the hardest realizations for parents to come to. But i highly recommend you explore that route sooner rather then later. I hope you live in an area where they have such a school. We travel an hour to get to one but we are lucky to have a school specifically designed for kids with Autism.
You don’t want your kid stuck in a special Ed class not customized to Autism and full of distractions. It becomes almost impossible for the teacher to cope with teaching the child with Autism in the regular class. The most caring teachers feel like they are failing.
You will have to get used to explaining Autism to people. ADHD is just a subset that is one of many disorders present with Autism. The good news is in our experience people are more educated and understanding now then they were even ten years ago.
Our son is happy. He has peers he can relate to. He just got accepted into a 4 year program for special needs adults on the East Coast nr Boston (we currently live West). He can’t wait to go having spent some summer schools there. Such a leap was unthinkable when he was younger.
Autism is a life-long journey. It is relatively rare for an adult with autsim to live independently, but with much help and learning on their part, they can hopefully learn the skills to live semi-independently. And with the rise of Austism across the county, there are more and more special places opening up.
This is a lot to take in. And you don’t have to take my word for it. Please research as much as you can (doctors, books, chat groups etc) and be kind to yourself. I wish you and your children both all the very best on this journey.
I appreciate the reply. So far, he's thriving academically. He's making big leaps forward in math and his handwriting has gotten so much better since we began medicating his ADHD. We are looking into getting a 504 in place for him asap (we have a meeting in 2 weeks) so that the accommodations he needs will be official and not just at the discretion of the school. We moved to this district a couple months ago because it has a wonderful reputation in dealing with atypical kids, so I'm optimistic they can help us, but of course I won't rule anything out for the future.
The social aspect is my biggest concern, and that is where his therapist wants us to try the ssri (lexapro, in this case). She described it as a sort of "fabric softener" that deals with the rigidity of thought some kids display. I'm just not ready to give him a second med yet. I need more time to research and sit with this diagnosis.
Thank you for sharing your experience- it's all a lot to take in and having other parents who've navigated it is so helpful.
Instead of advice I have a question- How do you get a diagnosis of the Level 1 Autism? I have older child, and your description rings some bells- SO mild that could be considered quirkiness. But IDK how that would be diagnosed if I chose to pursue that route. I am VERY reluctant to deal with psychiatrists because they are hard to get appointments with, they charge SO MUCH money and don't take insurance, AND worst of all, Ive found that they do very little analyzing- instead just hand out prescriptions. I'm curious about your process. Thanks!
The psychiatrist we used (who was very expensive and didn't take insurance) was recommended by the therapist (who is a lcsw so much less expensive). She recommended it because in her opinion, he showed signs of autism. We got an appointment within 3 weeks. He did a thorough intake and then met with my son alone for a while doing an interview. He gave us a very thorough report that we have a copy of to share with the school. You don't need to keep seeing a psychiatrist- only for med refills and initial eval, so for us it was worth the one time high charge to get a good diagnosis. We pay a very reasonable amount for his weekly therapy because she's in network w/ our insurance.
Last november we also got a level 2 high function Asd diagnosis (formerly aspergers) from a developmental pediatrician at Children's Mercy. We had previously got a diag of ADHD from a private psychologist in April while we were on a 15 mon waitlist at Children's. So when a spot opened at Children's, I decided to use it more as a second opinion on the adhd sibce we had reached our insurance deductible limit. I'm so glad I did!! During adhd evaluation and going through the teacher's reports, the developmental pediatrician said she noticed some atypicality and would like additional eval for asd and that's how we discovered that her "weird" or quirky behaviors actually had a name to it. Like someone else mentioned above, this has helped me tremendously seeing her through s different lens.
In kindergarten, our pediatrician had told us the school is supposed to evaluate. When we asked the school we got vague response like "well, we don't think it's necessary" even though she was struggling academically. So i called children's hospital to try my luck. We, the parents, know our children more than anyone. So follow your fut feeling. Took us almost 3 yrs but im glad we know now rather than later.
I worry a lot about the social part of the asd and still trying to find a good ABA therapist. We still medicate for ADHD and hoping for the best.
Something SOOO valuable the psychiatrist told me- the school's job is to get your kid performing at least at average. If a kid with ASD but above-average intelligence, who is only diagnosed with ADHD, manages to pull off average grade performance, that's where the help from the school will end. But you will be doing a disservice to the kid, because really they could perform far above average with the right accommodations.
ty! i am concerned mostly because I just want to know what we can do to help (it's socially- he has trouble reading cues, and then this interferes with his relationships). He is incredibly intelligent, and graduating college with a 4.0, and going on to get his PhD. It is SO SO subtle, but I know he misses these social nuances that are obvious to the rest of us. I feel that if we got a diagnosis, we could begin to address it - I am so lost with this. And then there is the whole part about having this conversation with my son. We've never had the conversation because it's just been something in the back of my mind for a few years now. I think if he could get help with the social issues, he would be a much happier person.
I read recently that many high-functioning autistic people, particularly those who have high intelligence, who went un-diagnosed, learn "work-arounds" as they grow up so they can blend in so well it's hard to see their asd. Since he's an adult, I wouldn't bring up a specific diagnosis, but maybe nudge him to see a therapist for his social issues and let that person diagnose him if needed.
Our son got the same diagnoses. HFA at 4, then lost this diagnosis and gained an adhd diagnosis at 13. Our son was helped enormously by a gluten free dairy free dye free diet. A recent study showed 40% of asd kids who are on this diet for 6 months have an improvement in symptoms. He was also helped a great deal by prescription vitamins from the doctors at Mensahmedical.com. This helped him with depression and anxiety and their attendant behavior problems. I believe that for him these 2 treatments caused him to lose the HFA diagnosis. I would do both before trying SSRIs.
Our son still obsesses about Topics he loves which fits his adhd diagnosis. Still working on helping him with these adhd issues. We will be trying an adhd drug soon.
Being mom to children with ADHD/Autism has its own set of challenges...and it sounds like you're taking care of those challenges as they present themselves. You are doing great, beemom! Keep on loving your child and taking care of yourself, too.
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