Last summer, my oldest, who is now six, was “officially” evaluated and diagnosed with autism and ADHD. I already knew this. It wasn’t a revelation, nor was it a nightmarish discovery leaving me breathless and disillusioned about what life would be like for us going forward.
I knew. I’d known from the time he was 9 months old and suddenly had a plateau in development. It wasn’t a surprise when the educational behaviorist sat me down with the results, more like… validation. I was actually relieved. FINALLY someone sees literally every single thing I see and doesn’t think I’m just being a crazy, overprotective, helicopter mom!
That doesn’t mean that everything she said AFTER that didn’t hit me like a ton of bricks in some ways, but mostly and honestly – I was excited to have a diagnosis and a guide to help me through it.
One thing I did differently from many other parents, was I never kept his behaviors a secret. I always felt his reality was important to share so people didn’t assume the worst. I made sure they knew why he did the things he did. I also felt like I had to back up my parenting choices, so I often had to share the “why” behind my decisions with foods, activities, sleep arrangements, discipline, and so on.
I also did a lot of educating and advocating for him to my family and friends, especially in times when the “I’m an adult and I shouldn’t have to move or change my preferences for a child who should respect his elders” folks would get all bent out of shape because his need for consistency and patterns caused someone to have to be slightly inconvenienced. (GRRRR!)
For as vocal as I am about his situation in “real life”, I guess I never really got into it here on this page or on our Facebook group. It now seems relevant and important even, to share these last six years with you.
Now, I’m not going to give you a play by play of six years, but I’ll start by sharing what we discovered in his assessment last year and what an eye-opening experience this was for us.
First and foremost; ADHD. It was a given. She literally spent 10 minutes watching him, softly giggled to herself, turned to me and said, “clearly he has ADHD. You knew that, right?”
Yes. I’m aware. VERY, VERY aware. This, she explained… is why he acts impulsively, cannot sit still, will ask a question but not sit around to wait for the answer, and absolutely cannot be still when in a situation of stress or unfamiliarity. Well, alright then. That was literally the first 10 minutes we where there. I felt like I could have gone home after that, but there was more… SO MUCH MORE!
Discovery #1 – He has a peripheral motor deficiency. Meaning; He cannot consistently feel his hands, arms and waist. This causes his issues with potty accidents, which are still at this point a regular occurrence. He learned to use the potty the spring after his third birthday, but for some reason that seemed completely lost to us, he constantly had accidents. The puzzling part about it was he would go right to it sometimes, then others, not even notice his pants were wet till you said something. It was maddening and SO HARD not to get angry with him when we just assumed it was because he was choosing NOT to use the potty. (Many, many mom-guilt moments there, let me tell ya)
Now we know; this deficiency is the cause. Here’s how it affects him: He does not always know that he needs to go until it’s happened. If sensory input is overriding physical senses- like, for example; if he’s playing with others, running around, or super into a movie or game, he won’t be able to do two things at once. Because all his sensory input is focused on that outside stimulus, not on bodily function, he will wet his pants and not even notice until that stimulus is gone. This issue is also the reason why writing and fine motor skills are not really improving even though we work on it almost daily. There are probably times when he actually cannot feel his hands! I mean, he can move them and if I pricked his finger, he’d feel it, but his brain isn’t really registering it. He’s just reacting on muscle memory not on a conscious level of recognition. This is also why some days he’s great at it and some days it’s like he’s never held a pencil before. This is also why when he’s really into a show, I can brush his hair and he doesn’t whimper or cry about it and if we are in the bathroom doing it, he will freak out and scream with every tangle.
What he is going to need for all of this is called perceptual-motor therapy. He needs this to help his brain develop connections between the nerves in his arms and hands and his waist to his brain in the proper format, all the time. This issue is likely why his occupational therapy was largely unsuccessful; because they never understood this issue and did nothing to strengthen these connections. They focused on muscles rather than neurological connection, so it wasn’t working.
Discovery #2 – He’s a visual/motor learner and his intelligence, as well as his communication, is NOT language based. We suspected this when he was very young and could not communicate verbally but would interact and respond physically. We all sort of assumed it had worked itself out as he began to talk and none of the specialists we saw ever told us otherwise. All their focus was on communication, repetition, repeating language, compliance, “sit and attend”, whether or not he did what he was told, memorization, etc., but none of them ever mentioned the possibility that he might not be a verbal communicator. What this tells us, is the why and how he absorbs and retains his information. He can see things on TV, repeat quotes and scenes from shows or hum songs and often, that is how he communicates. It is also why he has to touch everything, move constantly and often expresses himself through physical actions rather than words. We have learned to be mindful of this and watch his whole-body response rather than just listening to the words he says. There are therapies that can help this but it’s expensive, so I’ve just been doing research on my own and trying to apply the principles of those therapies at home.
Discovery #3 – At this time, he has no short-term memory! Revelation! My sweet little Dory – it makes SO MUCH sense!! His test consisted of 26 questions and he got 26 questions incorrect. There is absolutely NO argument there. This is why you can direct him and he will immediately do the opposite of what you told him to do. He hears you when you say it, but if the impulse of what he had already decided to do is stronger, it will override it and he will have no memory of your request. This is why I sometimes have to give directions multiple times and then make him repeat those directions back to me and even THEN, sometimes he will walk away from me as though he had no idea we just talked about something. She says this is something he can work through as he grows. He will likely develop these connections over time and until then, we just need to be patient, remember he is NOT trying to be defiant, he honestly just doesn’t remember and it is OUR job to help him lock in those memories and help him understand.
This is the hardest one and the one filled with the most mom-guilt. People are so quick to judge and punish for not listening, not following directions or doing what he’s been told. It’s the one thing adults love to chastise children for the most and in his case, it’s not because he wants to upset anyone or be defiant, it’s because he only stores the little bits of information and often loses the point. For example if I ask; “Hey, can you go to your room and get your umbrella?” He will get up and walk toward his bedroom and have no idea why, often stopping half way there to do something completely different. Those who take charge of him (including his parents) have to constantly remind themselves that it’s not his fault he didn’t remember, but it IS the adult’s job to understand his limitations and to work with him to push those limitations while staying compassionate and patient.
Also, and this is the hardest part – this is a “sometimes” issue, so sometimes he WILL remember and it’s important (and sometimes super hard) not to judge him with thoughts like, “well he remembered when it was something he wanted but not when it was something he didn’t”. I’ve heard this from people before and their assumption that he is just being manipulative and defiant breaks my heart. There is a legit neurological reason for this. The reason it happens sometimes but not all, is because the brain more keenly fires and connects when the stimulus is pleasurable. It’s the same reason we want sugar more than broccoli. Our brains desire pleasure more than pain or discomfort. It has nothing to do with being willful or defiant, it’s about brain response and desire. It’s the adult’s job to help him overcome his discomfort so he can accomplish what he needs to do – not just scold him for not doing it.
Because of the lack of short-term memory alongside his visual/motor learning base, we have learned he will retain information best by watching and then doing. If you want him to do something, show him how, don’t just tell him. Then, allow him to do it and guide him (hand over hand if necessary) then repeat that multiple times before expecting him to grasp it on his own. If he wants to do it himself, let him so his brain can work it out. If he asks for help, show him, guide him physically through it, don’t just give directions. If he asks again, or gets upset because it’s hard, don’t scold – encourage.
Discovery #4- He has excellent visual closure skills. Like INSANELY good. The test he took had 50 “questions” and he aced every single one without barely a beat. This means he can easily identify things and understand the world he is in, he can draw connections, see patterns probably better than most people and even if he is not expressing that, he is understanding.
He can define objects, numbers, colors, shapes and people, as well as understand those objects or things in relationship to one another. She said this means he understands the connections of things around him, as well as can easily identify his world. But, because language is not his primary method of communication, he can’t as easily express this understanding and he may seem as though he is not listening, or is not intelligent. She assured me this is not the case, in fact, quite the opposite, we just need to learn HIS language and we would see this clearly.
Discovery #5 – He uses people and places he trusts as “bookmarks” to understand where he fits in.
This is HUGE because it was such a huge piece to what was a mystery for me! As soon as she said it, I immediately understood him so much better. If he does not trust someone, he may not ever feel safe and may not be able to self-regulate his fight or flight impulse. This is why he always must bring something with him when he goes places, like a gun, a block, to wear a certain shirt, things like that and why dressing and undressing is so hard for him. Bookmarking is also why he continues to do much of his play by himself even though he desperately loves friends and begs us to be with them. When he plays with friends, he will play with them for a while, but then goes off to do his own thing around or near them. Eventually, he’ll go back to them, “bookmark” his place with them and then when he feels secure in that connection, he’ll go back to doing his own thing. This may end up being difficult for friends to understand about him if he continues this behavior through adulthood. He will need to learn to be empathetic toward the emotional needs of others so they don’t feel unimportant to him. They are REALLY important to him, but he doesn’t express this importance in ways that make sense to most people. He won’t be an outwardly emotionally-needy person, but he WILL need constant validation of his place in people’s lives to feel secure.
This explains why punishment of any kind is so traumatic for him – he sees it as his validation being questioned and in danger. This is why he begs me for hugs when he is getting a time out. This is also why he has often said, when he has been sent to “time out”: “I guess this means I have to leave home now” followed by an elaborate, tear-filled packing of a bag because he thinks it means I’m going to make him leave. He needs to know he has not lost “his place”. We have to work with that and redesign our methods of discipline to make sure he understands that just because he has done something wrong, does not mean we are pushing him out or that he has lost something. In order for him to actually learn a lesson, we will need to ensure he does not feel that his security is being jeopardized or THAT feeling will take over and the lesson will never get learned. This (in combination with the memory issue) is why after punishment, he often goes right back to do the thing he got in trouble for. He was too focused on losing us and not on the thing he did wrong and all he can remember was that it felt bad, but not necessarily that he was doing something wrong. *sigh* … this is hard, have I mentioned that yet?
Final recommendations were NOT to put him in any kind of formal education, not even a charter homeschool. Specifically, she suggested an independent homeschool situation that is not bound by state regulations, tests or intelligence markers because he needs to be somewhere that will not bind him or punish him for not hitting social/educational markers. He does not respond well to stress and immediately shuts down if he feels others are judging him. This is something that WILL improve over time as he gains confidence, but if he is placed in an environment with “behavior charts” and time outs for needing to sing to himself while organizing blocks, he will do nothing but fail and regress.
Much of his success is going to be directly tied to his confidence and with so much negative reinforcement in schools, it will likely be bad for him.
So, that’s that. For now. She let me know that at this time, he does not qualify to be considered Aspergers because he does not have all the qualifiers. If, when he becomes more confident with reading and writing he displays dyslexia, that WILL push him over that qualifier line and then we will get a new diagnosis. Until then, we work with what we have. I am deeply grateful to have received the kind of evaluation I did from someone so linked in to these behaviors. It was the first time (first of five) in an evaluation where I actually felt like the specialist was in tune with him enough to truly see each and every behavior he exhibits.
I highly recommend any parent who suspects their child may be displaying any sort of behavior that may lead them to a diagnosis of this, or any kind, to DO IT. DO it, please, please do it. Waiting only hurts your relationship and your child’s ability to function in this world. The earlier you understand your child, the earlier you can truly meet them on their level and learn to work with them in ways that ACTUALLY help them. I know it’s hard, I know it’s scary… but listen, what’s worse; Finding out your child is autistic? Or finding out your child was autistic his whole life and knowing you could have done something to help them explore their world earlier?
Please do it. For them, for you, for your family. Then, come back and tell me how it went so we can support each other.
That’s all for now…