It’s been a couple of months since we got Jacob’s initial diagnosis of autism and ADHD and I wanted to do an update on where we currently are.
We have been on a steep learning curve the last several months and even though we are currently in a bit of a lull, more learning experiences are sure to come up.
Medications
After we got Jacob’s initial diagnosis, we had some meetings with his developmental pediatrician about the options of medication {to help get his ADHD under control}. To give a little background on this, we had suspected Jacob of ADHD {and autism for that matter} for several years. So I had read A LOT of material about “natural” ways to help manage the symptoms of ADHD. We had tried a lot of them. And I feel pretty okay with saying we gave things a real shot – keeping with different ideas for several months.
I will say we have found some things that do help, in my opinion. However, with that said, I think they are mostly just good healthy habits that we have stuck with because they are just GOOD for all of us.
“Natural” Helps
First, I would say is a good diet. There is a lot of information about removing dyes {especially red dye}. In all fairness, we have never cut out all of that. We have always tried to eat healthy and provide healthy options for our kids. We rarely eat any frozen or pre-packaged meals. And this last year we stepped up our health game even more when we started “clean eating”. We aren’t perfect, but we do stick to it for the most part {especially when we are at home -which is most of the time}. I feel like this has helped Jacob have a more “stable” mood – but it helps ALL of us too. It was a lifestyle change for the whole family.
Second, we also limit technology in our family. We’ve never put hard rules on it like “only thirty minutes of screens a day” or anything like that. But the kids just know that watching a show or a movie is more like a BONUS than something to be expected. The kids will go days without any technology and they are totally fine with that. But other days, we may have a movie afternoon when we watch a movie or two. The point is, we have tried to create an environment in our home where they know not to expect it. There is a definite difference in our kids when they have watched a lot of screen time during the day and so we just avoid it. Oh, and no phones for the kiddos. Period.
Presciptions
There are some other lifestyle things we do that I think help, but the above two are probably the biggest ones. Mark and I were both open to trying medication. Our thoughts were that if we can get something that is helpful for him and helps make daily tasks easier for him than that was worth a try. If it didn’t work or feel right, we didn’t need to continue. But we were open to exploring all of our options.
Mark had some thoughts and opinions about medications {pharmacist!} and after talking through those with the doctor Jacob began some medication.
To make a long story short, we never really felt like any were super successful. The first medication we tried had no efffect that we could tell to help with his ADHD, and if anything it made behavioral issues worse. We tried upping the dosage and it was a no-go. After detoxing from that, we tried another medication which didn’t have the same negative effect on behavior but I still didn’t really notice much help with the symptoms of ADHD.
Psychological Evaluation
The next step after Jacob’s initial diagnosis was to get further testing done. We were blessed to be able to get into a center fairly quickly {sometimes this can be a 6+ month wait!}, but we were scheduled within about six weeks from his diagnosis.
This testing was done at a center over the course of a couple days and took several hours. Jacob thought it was so great and was really excited to have a lunch to take with him one day {homeschooling pro/or maybe con – packing a lunch is NOT normal for us 😉}.
About a month after the testing, we had a “results” appointment. I spent about an hour talking with the psychologist about her conclusions after the tests.
Report
About a week ago, Mark and I finally got the written report/graphs with all of the information. It is twenty-three pages long! Now, before anyone starts hyperventilating here, I promise I will NOT be going over all of it! It is not light reading BUT I will say, it has been extremely helpful. Also, it is LOTS of technical jargon…so prepare yourselves!
Here are the highlights:
- Jacob had wide variation in his scores – making things a little difficult. His working memory index is in the very low range. That means that he a a difficult time “registering, maintaining, and manipulating information in conscious awareness, which requires attention and concentration, as well as visual and auditory discrimination”.
- Jacob also performed below average in his attention and language processing as well as his inhibitory control and cognitive flexibility.
- He performed extremely high in his visual and spatial skills. His psychologist said she had never seen anyone score as high as he did. Genius? Maybe. Just kidding, but one of Jacob’s major strengths is his ability to “evaluate visual details and understand visual spatial relationship in order to construct geometric designs from a model. It requires visual spatial reasoning, integration and synthesis of part-whole relationships, attentiveness to visual detail, and visual-motor integration.” So basically, Jacob should be an architect or engineer 😁
- Jacob also performed in the high average range for processing speed. This measures “speed and accuracy of visual identification, decision making, and decision implementation”.
- Language functioning scored within average range.
- Adaptive functioning fell in the below average range. This basically covers the things that people do to function in their everyday lives. This covers lots of different areas {obviously – we all have lots of different things at play in our everyday lives}. His daily living skills were his greatest strength and his socialization is his greatest area of weakness. And his communication and motor skills fell within the low average range.
Autism
There was A LOT of information regarding autism. Basically, the findings indicated that Jacob does indeed have autism. His specific difficulties are “a lack of insight into social relationships and odd social overtures. He struggled integrating gestures and gaze, as he displayed limited gesture use. He frequently displayed repetitive behaviors during testing. These challenges will impact Jacob’s day-to-day functioning, specifically with regards to his social functioning.”
Summary
Here is the summary the psychologist gave:
“Jacob is a nice boy who is experiencing significant challenges. He has symptoms consistent with ASD {Autism Spectrum Disorder} that are particularly impairing his day-to-day functioning. Additionally, he has co-morbid executive functioning deficits, and a rule out should be considered for ADHD. Despite Jacob’s significant symptoms, he has positive underlying strengths that need to be tapped as interventions are implemented to help him acquire skills to cope and prepare for future challenges. Jacob’s strengths combined with evidence-based therapies and supportive parents bode well for a positive prognosis.”
She confirmed his diagnosis of autism without accompanying language or cognitive impairment. She did rule-out his ADHD diagnosis however. This surprised us. She believes his symptoms of ADHD are a result of his autism and not a separate diagnosis. So for right now, we are no longer pursuing medication for ADHD.
Final Thoughts
We are hopeful. It has been really amazing actually to finally have a diagnosis. It gives us a direction and for anyone that knows me, knows that that provides me with loads of comfort. Our psychologist also gave a lot of specific recommendations moving forward which I think are going to be very helpful.
Jacob is an amazing boy. He has taken this diagnosis better than I ever could have hoped for. Mark and I knew that we would need to have a big sit-down with Jacob but hadn’t done it yet. When one night, after the other kiddos were in bed, Jacob came and sat on our bed and asked us. It put us a little on the spot, but went so well. Jacob had specifically asked why he had been going to these new doctors {honestly, we had been a little vague about it with him}. We explained that if his foot hurt, we would take him to see a doctor to help him with his foot. And that these doctors were helping him and us understand how his brain worked. And his brain had some things that made certain things a little more difficult. But isn’t it amazing that we have doctors that can help us?!
This totally made sense to him. After some more talking he went downstairs to get ready for bed. When I went to tuck him in, he was looking at a book which talks about the human body. He was on the page about the brain and pointed, “is this the part of the brain that I have a hard time with?” He was pointing exactly to the executive function part of his brain. I told him it was and he processed and was like, “okay”.
We feel so blessed that Jacob has taken it so well. I do not believe that currently thinks there is anything “wrong with him” but it is just something that is. We are also not naive enough to think that there will not come a day when he realizes these differences between him and others and struggles may come. That is a big problem with high-functioning autistic kiddos – that they are aware enough to see that they are different. Honestly, this is our biggest concern moving forward. Of course, we want to help him develop the skills he can to be as successful as he can, but mostly, we want to help him maintain the knowledge that even though his struggles might be different from others – it doesn’t make him any less. Firming this knowledge up before adolescence is goal #1 for me with Jacob. He is so lucky to have so many who love him. Love is our super power.
