Hello- we've received results back from neuropsychological evaluation for our 9 year old son. It's shows he has High Functioning Autism, along with anxiety and ADHD. This was a really comprehensive eval so I trust the results- it's just a lot to take in... my question for the group is to what degree do folks here have experience with this type of complex diagnosis? We were in the ADHD boat for a while, now with the added ASD diagnosis we feel we are in two boats, or maybe another boat entirely? My son is on guanfacine 2mg and we also started Zoloft very very low dose recently for anxiety... have been recommended to start ABA therapy. This is different from CBT therapy he has been doing...our CBT therapist also thinks ABA would be more appropriate therapy for him...
Any thoughts would be most appreciated.
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Auggie123
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We had very similar experiences with initial adhd diagnosis and then after a few years mild autism or high functioning autism diagnosis. Our son resisted ABA therapy and hated it which makes me think that ABA might be more helpful for more severe autism cases. All doctors recommend ABA but from our experience it’s not all that at least from our perspective and our son couldn’t stand it. Also, I don’t think this adhd and autism diagnosis is clear cut there is always room for inaccurate diagnosis meaning giving autism diagnosis from early age or wait until the kid grows around 9-10 years old and evaluate his/her social skills to see if there is a struggle in the social emotional area. I think most doctors start with adhd diagnosis and then add autism diagnosis if the kid doesn’t show age appropriate social emotional development. Hope this helpsAlex1016
Thanks so much for the response...I'm curious what was it about ABA that your son didn't like? I'm still learning exactly what it is... I'm also curious if you didn't end up doing ABA what types of therapies or interventions did you use that helped you all? I understand each child is different and what works for one won't necessarily work for another...but would be great to hear what approaches were helpful for you? Thanks so much...
Although it may not feel like it right now, it is wonderful that you got this diagnosis! Our son has the same diagnoses, though the anxiety is not an official diagnosis for him. He is also gifted, which your son may be as well and this too adds it’s own layer of complexity.
When our son was little we saw a board certified behavioral analyst who taught us ABA influenced parenting techniques. We did not ‘do’ ABA as it it commonly known—high number of hours of therapy a week between therapist and child focusing on compliance through behaviorist rather than cognitive principles. We found the ABA principles when applied in a positive parenting approach to be very helpful.
We have also continued with speech therapy based social skill instruction which focuses on teaching kids the “why” of the social reasoning that they do not intuitively get. This is largely considered the more humane approach as it accepts the child for who they are and teaches them why they may want to do things differently rather than require performance of behaviors without buy-in. In my opinion, a little of both methodologies is needed, but not too much of either.
The good news is that at the younger ages, you will see a lot more progress when you move away from more general psychological based treatment and toward more holistic treatments like speech, OT, and asd focused positive parenting. Having the diagnoses can really help. If you haven’t already, I would encourage you to get in touch with your local autism society and meet up with other parents. They can give you more information on local therapy providers and their approaches.
By the way, there is a great description of asd and it being less a linear spectrum than a kaleidoscope here: the-art-of-autism.com/under...
Thank you so much for this. At what age was your son diagnosed? I understand what you mean about ABA. We will meet with someone this week to see her approach and determine if it is the right option for us. There are some skills that our son may need a more structured approach to learn-- so I don't want to write it off just yet... but will see what happens. I really appreciate your words and sharing your advice as we are new to a lot of this. I also wondered is your son on medication?
Our son was diagnosed in first grade. Just to clarify, I am not ‘against’ ABA. I think it can be helpful when done well and at the right ages/stages. It does not require any metacognition which is what CBT and some more advanced ideas in social thinking curriculum also require. Because of that, for some skills and for some kids it may be useful at developmental stages where that insight isn’t developed yet. People are all over the board on preferred therapies for social skills. Yes, our son takes a very low dose of Focalin and Guanfacine as well as high quality multivitamins. They have all been helpful
Thanks so much. That makes alot of sense... the metacognition part I wonder about sometimes with our son...we have been doing a few months of CBT and that was one part that she noticed that prompted her to suggest the neuro eval...his ability to grasp certain things just wasn't there. But in other ways he finds CBT relieving I can tell, like on another level he enjoys going there and gets some relief from it, because she is very kind and listens really well. But his ability to actually put the things she talks about into practice is not really there. So we may end up doing both CBT and ABA, or modulating between the two perhaps. Thanks for sharing about your sons medication as well. Re: high quality multivitamin, that's great. I'd like to have my son on a multivitamin but here is one interesting thing we found out, which is sort of random but I'll share it: we had our sons blood tested in January when he first was diagnosed with ADHD to check for any vitamin deficiencies...it showed he was low on Vitamin D, and had an extremely high level of B12. Like way off the charts high. It was puzzling to the doctors because he wasn't on a multivitamin. I found an article recently on a study done in Norway that found kids with ASD can often times have extremely high levels of B12. Of course not all the time or with every kid-- but this particular study made a connection about this. I thought this was interesting... kind of random I know...So we have our son on a vitamin D gummy but not a multivitamin just because of this super high B12, they told us to avoid a multivitamin. Ok I have another question for you: did you share with your child his ASD diagnosis? If so, how did that go, what tips would you share? We very much want to be upfront with our son about this- but want to do it in the right way so he doesn't feel self conscious...Thank you again for your words, they are really helpful!
Regarding vitamins, I have come along way from where I started on my thoughts on them. Initially I thought that vitamin supplements were often a misguided attempt by well meaning parents to avoid scientifically proven and needed medications. Then our son was found to have a genetic abnormality, inherited from both my husband and myself, that causes him to only process about 20% of the folate he ingests.
With a lot more reading and research I learned about a neurologist at the Children’s Phoenix Hospital who is also the pediatric neuro developmental director at Barrows-one of the top neurology hospitals in the US—Dr. Richard Frye. He has a child with autism and has been researching autism for decades. His latest work regards the genetic and mitochondrial abnormalities that affect folate processing in children with ASD. Vitamin B-12 and Folate balance each other in the body. Strangely, high serum levels of either can actually mean a functional deficit in its processing. Anyway, he has published work and currently has a clinical trial underway to verify specific vitamin supplementation as helping core attributes of autism. I think for some families with possible genetic abnormalities it may be very beneficial to see a knowledgeable neurologist about testing and supplements. We believe it has helped our son, but again, he has a medically diagnosed need for it. For this reason, I think taking supplements without knowing what you are treating could be as harmful as it could be helpful. Better to get a doctor’s input.
Regarding telling our son—yes! There are a number of great books out there, my autism heroes, cats and autism, all kinds of gentle explanations. We used books initially, but we continue to make a point of telling him of the gifts it brings—eye for detail, problem solving, logic, sensitivity, etc. We point out those with ASD in movies—Dan Akroyd, Darryl Hannah, Jerry Seinfeld. We read books by Greta Thunberg and biographies of Elon Musk. And of course there are all the figures from the past. He didn’t want to hear much about it at first, which was fine. We introduced it. With ASD affecting 1 in 42 now, there is plenty of company. At the elementary level it can feel like you are alone because of how school and privacy works at that level. But with time, you find that there are many, many other kids If you connect online or in person to social groups (usually run by speech pathologists or through autism society) he will get to know many others and everyone will realize the spectrum is big and beautiful and nothing to be afraid of.
Thank you for this. Very interesting about the neurologists work exploring folate/B12 and autism. How did you discover that your son had genetic abnormality relating to this? The blood work that we had done for our son was done through his pediatrician. This was the results that showed the excessive B12 and low D levels. I imagine to explore further we wouldn't go through his pediatrician but a specialist of some kind. I'll do some reading on Richard Frye. We've shared briefly with our son the diagnosis- he doesn't seem keen to talk much about it right now...so we're not forcing it...
Our pediatrician ordered genesight testing to figure out which medications might be best and it showed up there. However, when you read more about folate processing abnormalities, you see that there is more than one mechanism (other mutations and syndromes) that can affect the body’s ability to metabolize correctly.
Our pediatrician was not familiar with the link with autism. The neurologist was. We had to ask for a referral, but they were happy to give it when we explained our concerns. Did your pediatrician refer you to a pediatric neurologist? It might be worth checking into. Many kids on the spectrum (and with ADD) see a neurologist at some point anyway to rule out other causes or fine tune meds. If you do see one, it would be great it you saw one at a university hospital where they are more up to date on current research than those in private practice.
If you are looking up information to learn more about Dr. Frye’s (there are others too looking at same) research, you can look up Folate Receptor Auto Antibodies and autism in PubMed. The FRAA associated with high b12 blood levels are the binding type. An easier to read article is here: site.autismadvocateparentin...
For our son, taking the right supplements made a really big difference emotionally and socially (not so much attention). The positive difference was noticeable 4-6 months in and has only increased. I just wish I knew this info about his genetics when he was a lot younger. Sigh.
I am glad that your son took the news in stride! Our son didn’t want to talk about it either at the time. A great book for the tween years that he may enjoy is here: amazon.com/Asperkids-Secret...
Our son has been taking a high dose broad spectrum methylated b complex vitamin, Nordic natural fish oil, and magnesium, zinc and iron. A new study just came out in the Journal of the American Academy of Child and Adolescent Psychiatry on micronutrients and ADD. I think the study used Hardy Nutritionals. I have never used them, but I know several other frequent posters on here do. The article is here: sciencedaily.com/releases/2... BTW, our supplements were needed based on our son not processing folate well, so might not be good for someone else who does…
Thank you for the feedback. Did you end up doing lab tests before and that’s how you learned about folate? We want to run labs on my son to see if any deficiencies show up. I’ve read a lot about B vitamin deficiency being common w ADHD kids aka Pyrrole disorder. Glad you found something for your child. Thx again
My son was diagnosed with high functioning autism, adhd, he has anxiety and epilepsy. It is a lot to take in initially but eventually the dust will settle and all will get stabilized. The key is to get the right meds with the least side effects possible. The med process is a lot of trial and error till you get the right meds but be patient and positive about it. If your son gets aggressive with a med get him off of it asap and try a different med. my son takes guanfacine too and so far it works well. He takes sertraline for anxiety and it has helped a lot! My son had speech delay so he had a lot of speech therapy at school which is what helped calm his challenging behavior. Through speech he was taught to use his words to express his discomfort or anger. It worked! Speech calmed him down a lot and he is no longer aggressive. So I would say a combination of speech along with guanfacine helped control then challenging behaviors. If your son doesn’t have speech delay then ABA therapy will help. Not all ABA therapist will work for your son so if you do not see progress then find another ABA therapist that has more experience and will do play therapy with your son to improve his behaviors and believe me it will work out! Take care
Thank you so much. I really appreciate your words of hope. It really is a lot to sort out right now- I'm so appreciating just hearing from others who have been at this for a while. Yes so far the Sertraline is ok for him....it's only been 4 days... and I know it takes longer to really see benefits. But at least no major side effects are happening yet. Phew! He's on guanfacine too for about a month now which seems ok for him too. Am curious- How long was it that you saw Sertraline start to really help? The medication process has been wild. I had no idea what that part would be like, trying all these meds and seeing what works/what doesn't. It really is something you've got to stick though until you find what clicks. Such a huge part of the process. Thanks so much for your words about ABA therapy. We are definitely going to tread carefully and make sure it feels like the right fit before throwing all our eggs into that basket.
It took about 3-4 weeks to see a difference. Sertraline made him less anxious and less negative. He went from being so nervous to raise his hand in class to raising his hand occasionally and participating in group activities. It has helped him make more conversations with kids. His anxiety used to make him pinch the skin on his lower lip and after he started with sertraline he stopped! The key with sertraline is to have right dose. Initially he was taking too much and it was making him too relaxed almost sedated and it was causing involuntary urine leaks. So I came down a bit on the dose and he is fine now.
By the way ABA is meant to train your son to self-regulate, communicate issues without reacting negatively, and how to handle issues properly. Its an important life skill. I wish there was ABA for some non-autistic people…some of the typicals need it more. It’s not meant to make him non-autistic. My son is autistic and he has his quirks and I love him with ALL his imperfections. I call it Awesomism 💖
Hi there. High functioning autistic adult here. ABA is torture and abuse. It forces kids into hours and hours of therapy to teach children how to be neurotypical. It’s essentially dog training.
Thank you for sharing this...it is so helpful to hear your perspective as someone who did ABA themselves. We're in the learning process and gathering information as it's beginning stages for us...we're very new to what's out there in terms of options to help... It is so important to listen to our son and how he is feeling about it all. We want to have as much information about what can work and what can be problematic. Thank you for sharing your perspective and what it was like for you...
We have exactly the same situation except it took a few more years to finally figure out his social issues were related to ASD, not his ADHD. He’s getting way more help now with this diagnosis but I’m still unclear as to what therapy is best. Right now he does individual counseling & I honestly don’t think he’s getting anything from it. After several months I don’t see him using any new tools or coping mechanisms. I’m thinking to go a different route soon. He now goes to a therapeutic school so I believe this will help most. I think a social group would be helpful to working in social skills.
Thanks so much for this. I understand what you are saying... we are considering a therapeutic school as well for the fall. I'm glad to hear that this is something that you all are finding helpful..as the educational setting seems really important to get right... our son has been in Montessori classroom this year, which has its pluses and minuses. They are very nurturing which is wonderful-- but I'm not sure it's the right classroom setting for him just because there's so many options in the room and perhaps not enough structure- his therapist suggests that a bit more structure could actually be really helpful for him. So we're researching different options for the fall... will see what happens. A social group to work on social skills is such a great thought, I've been looking into something like this-- but haven't found anything yet nearby. Thanks again for sharing.
Hi Auggie123! I know your post is a few months old but wanted to check in to see if your son was still on Guanfacine and Sertraline. My son has been on Guanfacine ER for almost a year but we may start Sertraline low dose in addition to and see if it helps him with anger outburst but also some anxiousness we see at home at night but I think his aggression at school is also anxiety. At what dose did you start Sertraline? Also did you give in morning or night? My son is 6yo so he's on younger side but same diagnosis you posted, Severe ADHD and Mild ASD.
Hi! Thanks for the note. Yes he's still on both. We started super low .50ml (he does liquid suspension), then moved up slowly from there. Are you working with psychiatrist with the meds? They should be guiding you as far as what dosage to start at for child's weight, etc. We moved up very slowly in small increments with her guidance. We have found these two meds (guanfacine and sertraline) to be a good combination for our son and the challenges he has. Parent training also has been really critical as well. Outbursts have lessened considerably. Thank goodness bc I know how troubling that is. I would highly suggest medication and ALSO parent training on how to respond, react to behaviors. Our son is in ABA. It is a holistic program that is very child and family centered. Not sure where you are based but perhaps there are resources like this in your area? Feel free to ask anymore questions you have and I'm happy to help how I can.
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