Once you remove ADHD from the table over which this question is hovering “Why is my son so different and what do you call it?” there are a few distinct possibilities left to explore. Two out of three psychologists seem to think Max’s OCD-like behaviors point more towards personality based issues rather than brain based. One mentioned Sensory Processing Disorder and the other Non-Verbal Learning Disorder. Both of those disorders do explain quite a few of Max’s quirks and challenges the way ADHD also explained quite a few of them.
Max’s current psychologist explained the diagnostic process and goal to me as looking for patterns of behavior and matching them up to known disorders as closely as possible, weeding out the ones that don’t fit as well until you narrow it down to the disorder that explains the most. It’s certainly a complicated process and complicated even more by the fact that many disorders have things in common – so you have to pick through them weeding them out by their key differences. So last week when Max definitely and clearly did not meet the criteria for ADHD in testing – I knew I was going to have to do a lot of reading about SPD and NVLD.
I started reading about NVLD and it definitely explains more than the ADHD but a question kept nagging at me and then I read this post that pushed me to read about Asperger’s Syndrome and Autism. Two things finally leaped into full view: the fact that for years people have asked me if Max has Asperger’s Syndrome (starting with a super close friend who’s known him since birth and knows someone with Asperger’s) and the fact that every time I read an article written by parents about their autistic children I feel this great rush of relief that someone knows what I go through and I think this “You may as well have just written about Max, except that he doesn’t have autism!”
How many times can you think that and have that realization that Max has so much in common with autistic children and not ask if he’s mildly autistic? In fact, I DID ask his first psychologist and he ruled it out immediately and his explanation seemed really strong and reasonable so I never looked deeper into Asperger’s or mild autism*. Had I done so I would have challenged him on his swift dismissal. Everything is complicated by the fact that people can have both ADHD and autsim or ADHD and NVLD.
I am plagued with people who all along this way have insisted that Max is a perfectly normal little boy. Implying that I’m just a weak-ass mother who can’t handle having an intense child. All of his special needs frequently get put down to bad or weak parenting in which I am coddling him and “allowing” him to make me into his slave and he gets what he wants and is generally just spoiled. If he does things that make people uncomfortable and seem rude – it is implied that I’m not cracking down on my kid enough. What’s really needed is a good old fashioned dose of my iron will breaking his down. So my kid is normal and I’m just a weak parent. Which is bullshit.
Here’s what I think has been missing from all of our visits to psychologists: it has all been focused on his challenges at school which some years are horrible – teachers putting up their hands and saying they can’t do anything more to other years where we feel stupid for having gotten all pushy about getting help because he’s doing so well (like this year). But no one has ever really asked about his home life and his social life more than superficially. “How does he interact with other kids at school” does not answer the important question of how he interacts with kids he actually calls his friends. It’s all focused on how his behaviors might be causing other kids problems therefore requiring intervention and a diagnosis. But what about how he interacts with people in general? How about asking for the long history of his developmental stages, where he’s fallen short or where he’s excelled? Why haven’t they asked me more about his sensory issues which are clearly a HUGE IMPEDIMENT TO HIS ABILITY TO FUNCTION WELL IN THE WORLD AT LARGE?
Because when you start asking those kinds of questions a whole different picture emerges. The fact that he has rarely been willing to spend the night at other kids’ houses when he was smaller and that when he did he came home miserable and upset because their houses smelled horrible and there were too many kids and nothing was done “right”. He just ended up refusing to try anymore. Not just sleepovers but just going to other kids’ houses for a couple of hours. He wouldn’t. He stopped being willing. So he would only play with kids who came over to our house. And there is the whole question of how he “plays” with other kids and how that has greatly limited his friendships. He has a very narrow range of interests and is very obsessed with the few he has. Everything he’s interested in is pretty much related to each other in some way. He also doesn’t actually ever play with kids so much as he directs them. If he doesn’t get to decide what they will “play” and decide the rules, he won’t play. Friends drift away from him because most kids don’t find it fun to never get to make up games or change rules or go outside and run around.
Part of why these questions weren’t asked is because we came to the psychologist mostly focused on his issues at school. But why didn’t anyone dig deeper? It’s not like the only criteria for success is school life. At home and outside of school he has struggled a lot. Why didn’t anyone ask for a detailed history of his developmental stages and how he “plays” with other kids? Why didn’t anyone think of Max’s extreme sensory issues as important enough to look into more deeply? His sensory issues have impacted his life and ours negatively since the very beginning and they aren’t going away and they aren’t because he’s a willful brat with permissive parents.
ADHD and OCD only addressed these sensory issues in a superficial way. Max has so much in common with people who have both these things so it’s easy to see how we could accept this probable diagnosis. Once I started reading about AS and autism though – it was a revelation. Max was screened for autism when he was 18 months old and hadn’t started talking yet. The developmental evaluator was satisfied that he didn’t have it because he interacted with her very directly with eye contact and responding to her directives and understanding everything she said. So I was reading the Autism Fact Sheet from the National Institute of Neurological Disorders and Stroke and found the differences between the early signs of autism and the later signs of autism keenly interesting.
Here is a list of the early signs of autism:
No babbling or pointing by age one – Max babbled and pointed aplenty. Though many people commented on his intensity.
No single words by 16 months or two word phrases by age two – this is why he was screened for developmental issues – by 18 months he could only say “no” (of course) and “uh oh” which they didn’t really count as a two word phrase. But he ended up saying his first 2 word phrase by 20 months.
No response to name – he knew his name and responded to it consistently except for when he didn’t feel like it (while tearing books off the bookshelves)
Loss of language or social skills – I don’t even know how to evaluate social skills in a 1 year old but by 2 I can say he wasn’t up to par with his other tiny peers in the social department.
Poor eye contact – not a problem with him. He made plenty of eye contact and freely stared people down.
Excessive lining up of toys or objects – YES! BINGO! Except on it’s own this is no criteria for autism. But yes – this was primarily how he played. Plus he had a morning ritual of pulling out all our video tapes and lining them up very carefully in a cavalcade – every morning.
No smiling or social responsiveness – not a problem. Though he often had a very intent and serious face (hence people saying he was an intense baby/toddler) he was super responsive to games with mom and dad and sometimes other people which would send him into the best peals of laughter EVER.
So with those early signs he gave enough reason to be screened for autism but not enough to meet the criteria for further evaluation. Really, he was just a little bit off from his peers developmentally. Nothing problematic. Well, except for the major major meltdowns and a whole lot of other stuff that could be put down to regular toddler stuff if it weren’t for the intensity of it. And up until two I really didn’t see any of the sensory issues. His picky eating started at 18 months but wasn’t truly severe until well into his twos.
But then I read the later signs of autism:
Impaired ability to make friends with peers – I think to outsiders he seemed fine. But he only had one real friend and he frustrated most other kids he played with. Play-dates required a lot of intervention from me trying to get Max to play other people’s games instead of trying to force them all onto his narrow agenda. We called him “Napoleon”. He was not invited to too many play-dates. Our mode was to visit neighborhood kids often – just knock on their doors and see if they could “play” and our neighbors were all really awesome and tolerant and encouraged their kids to play with Max but it was not easy for them. And Max didn’t ever notice if they weren’t excited to see him. He loved older kids way more than kids his own age, still does.
Impaired ability to initiate or sustain conversation with others – Max has never had a problem initiating conversations with anyone. He is very rarely shy. He initiates conversations like mad and he can sustain them on his end for hours provided the conversation is only about what he wants to talk about and generally he doesn’t care if the other “participants” are actually taking part. So – not great at sustaining normal conversations. Not great at having normal conversations to begin with. He talks AT people, not often WITH them. If people try to steer conversation away from his topic he will relentlessly interrupt them and take it right back to where he left off. This is uncomfortable for people and I spend a lot of time moderating conversations.
Absence or impairment of imaginative and social play – YES. Max doesn’t “pretend” ever. If he sword fights with sticks he isn’t pretending to be a pirate. He doesn’t Make up games so much as he just makes up rules. He plalys very literally. He doesn’t make stuff up. Mostly what his play consisted of was setting things up. Train tracks, Hot Wheels, Legos and later on Bionicles and Stikfas – all of them he spent much time setting up for play but not really playing with them. That was my job – to come in and race his cars or make his trains move and as long as I didn’t mess things up – this was amusing to him. But all he really liked doing was building things with the legos but not actively play with them. So YESYESYES.
Stereotyped, repetitive, or unusual use of language – YESYESYESYES. Well, once he started talking he never stopped and his language and vocabulary became sophisticated for his age very fast. His comprehension seemed exceptionally good too. He used the word “irony” correctly in a sentence when he was 3 years old. However, he mimicked A LOT too. He still does. He obsessively repeats parts of shows and movies that he particularly enjoys. He still does. Often he repeats those parts verbatim from memory but also when we’re rewatching his favorites he’ll repeat his favorite scenes right after they’ve happened sometimes 3 or 4 times WHILE WE’RE STILL WATCHING the show. It’s really distracting and annoying and it’s hard not to shut him down. Or try. But he’s incredibly difficult to shut down. He constantly impressed adults with his language skills – sounding more grown up than he was. He still does that.
Restricted patterns of interest that are abnormal in intensity or focus -This one looks so much like the following one – I’m not sure how it’s meant to differ. This is where it would help if I had a doctorate in this subject. How does “patterns of interest” differ from “preoccupation with certain objects or subjects”? I suspect this relates to the types of interests he has? So the question would be are the types of things he’s interested in all similar? I’m revising this post to say that I’m not sure this one is a match with Max but it sounds like it is. I need more information on this one.
Preoccupation with certain objects or subjects – YESYESYESYESYESYES. To the umpteenth degree! Let’s see – his most favorite thing and subject and activity in the world is video games and he knows everything about the games he plays including things about the companies that make them and differences in their quality of work and he would like to talk about this to everyone all day long over and over and over neverending and people try really hard to be polite about his relentless pursuit of this topic. He also loves graphic novels but only the few series’ he loves and though he loves them he really isn’t interested in talking about them. The other subjects he’s obsessed with are zombies (zombie movies, books, and shows) and we enjoy this one with him quite a bit. A favorite family activity is to map out our strategies for survival in a zombie apocalypse. For Max the topic follows a script. So the conversations don’t vary much from time to time. He asks the same questions over and over “So which gun would you choose to have in a zombie apocalypse” and that’s the beginning of the game. He asks it every time in the same way.
Then there are his “rants” as he calls them and they are also scripted – he brings them up especially when he’s upset even though these rants have almost nothing to do with the thing that upset him. He will be complaining about the thing that upset him and somehow he’s suddenly having his favorite rant about religion, or abortion rights, or homophobia. They are the same all the time. He doesn’t often bring up new thoughts or ways of expressing them. They are tapes he plays and recites in a particular way. He doesn’t require you to take part in them but he does like it when people do. A new one is that he’s now super pro-legalization of marijuana. Which is funny because while I am also pro-legalization of marijuana even though I hate the stuff for myself (yes I have inhaled) – I don’t really feel that strongly about it. But Max does. That’s pretty much it. He loves cats – to point of obsession but he doesn’t really consider this a topic of discussion. He also loves humorous pop culture as seen on youtube but he wants to show this to you all the time whether you care or not but doesn’t really consider this a topic of conversation to bring up – though he’ll engage in it if you draw him in.
There’s this other thing that Max does often but I’m not sure how many people notice it – after he says something he’ll often say it again to himself under his breath. It’s a little distracting and I don’t even know if he knows he does it.
Inflexible adherence to specific routines or rituals – HOLY FUCKING HALLALUJA YES YESYESYESYESYESEYSEYSEYSEYSYEYSYEYEWYYEY – yes. Yes. Do I even need to give examples here? Do I? He requires help with his routines. I think that’s the only difference between him and a person with OCD. He needs me and Philip to make the rituals/routines happen. The morning ritual (which Philip is incapable of performing because he refuses to remember what order to hand Max his clothes in and he forgets about giving Max lotion after laying the shirt on his chest but BEFORE giving him his socks). If we don’t perform the rituals with him, they don’t happen. But what makes them problematic is that he will not move on to the next thing without them. As I mentioned in a post recently – if the bedtime ritual doesn’t happen, then he doesn’t sleep. I have managed to simplify his rituals over time so that they are more bearable for me and Philip but they are essential to him still.
This morning he brushed his teeth without me telling him to. That, my friends, has never happened before. He was very proud and made sure I smelled his breath. One of the constant struggles for me in parenting Max is that his need for rituals is so strong that they are created very easily and only painstakingly overcome and removed or changed, so I’m constantly trying to anticipate them before they happen and prevent them from becoming rituals by insisting on some variation. This is painful for both me, Max, and Philip. Because we’re working against a very strong inclination. I think the hardest part is that Philip and I are also extremely ritualistic. So we all have this natural inclination but Philip and I feel an obligation to prevent Max from forming negative rituals or an unhealthy degree of dependence on ritual but also – it’s exhausting maintaining the balance between all of our needs for rituals and routines with our need to become less dependent on them so we don’t become paralyzed by them.
Six out of fucking seven. Now why has no one suggested testing him for Asperger’s or autism? Why? Six out of fucking seven, people. I know that you could get seven out of seven and still not have AS or HFA (soon to be the same thing?) but how have 3 psychologists now not even asked it? Max’s current doctor came closest with NVLD but when I read about NVLD it doesn’t fit as well as Asperger’s does. Every fucking bell is ringing here. I’m aware of how many F-bombs I’m dropping. In case you thought I wasn’t aware of how repetitive it’s becoming. There just comes a point where that’s the only level of emphasis you have left to express what you’re experiencing.
Outside of the School Context – social health
In the school context – if he keeps doing okay I suppose some people might consider it irrelevant to push for a diagnosis. But I’m not just concerned about how he does in school. That was just the most urgent cause for seeking help. Right now my son does not have a healthy social life. He technically has 3 good friends. 2 out of the 3 never invite him over or out because they really don’t jive with Max that much and only hang out with him when we make them because we’re very close to their parents. 1 out of the 3 really does like hanging out with Max and it works right now because he’s just as interested in video games as Max is and is perfectly happy to restrict all their time together to playing the video games Max wants or watching the shows Max wants. This kid and Max have known each other since they were born and his mother and I are very close friends. They have a great deal of tolerance for his quirks and obsessions and that’s why Max still requests playing with him. But he really only remembers to asks if we can invite him over once a month. Or less. So Max isn’t hanging out with anyone outside of school besides us and his xbox live friends who he hasn’t been playing with online nearly as much these days and every month or so his one good friend.
People really truly deeply want everyone to be considered “Normal”
I say fuck the fear of noticing that some people are different.
I’m not normal. I used to carve my skin with a steak knife.
The goal isn’t to be normal but to make being different safe and as healthy as possible.
People really do love to tell me how “normal” and “well adjusted” Max is. I would like to ask them if this was their kid, would they think it was healthy? Except you can’t ask them because they really do have more or less normal kids and have a million pat answers for me that would have worked for their kids “Just take away his video games and he’ll do other stuff.” or “Make him go outside and not come back in for 2 hours” or all other manner of really stupid suggestions because they don’t get it. If Max was obsessed with swinging on a swing instead of playing video games I wonder if they’d advise me to force him to do something else or if they’d think that was fine since swinging on swings is an acceptable activity whereas most adults think playing video games is bad for a kid’s health and mind? While that would be interesting to know – I am done hearing people telling me he’s normal and well adjusted. People who think that don’t know fuck-all about my kid and if their kid was the same and they thought it was healthy and normal then they also don’t know fuck-all about what’s healthy and normal for their own kids.
I’m worried about Max’s antisocial behavior. He likes people a lot when they share his interests but if they don’t he’s just as happy being by himself and with his parents. He has new buddies at school but he has no interest in seeing them outside of school. I’m worried about Max learning to care for himself without me to give him the constant structure he needs to accomplish this stuff. I’m just as worried about his diet as I have been since he was two even though I’ve come to accept his sensory issues as a very real and hostile experience for him. I work tirelessly to try and get him to eat more variety. Until I get to the end of my energy and just stop trying for a while. Inevitably my worry builds up again and I renew my efforts in an endless cycle of trying to make him as healthy as I can within the limitations before me. I make efforts to get him to go on walks for exercise. Max doesn’t like wearing shorts because he hates the feel of air on his legs. So in warm weather he is really uncomfortable in the sweats he wears. The only pants he WILL wear. Usually with the pockets pulled out. He frequently hurts himself when getting exercise – hurting his ankles. Not surprising now that we’ve explored the foot issues.
Reading social cues and how Max only reads the loud ones
One of the other things I read over and over in my reading about both Asperger’s and autism is about lack of ability to read social cues. I don’t think these “later signs” listed above really address that and it does seem to be an important diagnostic factor and Max has a lot of difficulty with this. He has a well developed sense of humor – which a lot of people seem to think is inconsistent with either of these disorders but my reading suggests that that isn’t necessarily true. But problems with reading social cues is. Max has a very hard time telling when people are signalling to him that they are upset, or bored, or impatient, or annoyed. He understands only the big signals like laughter or anger.
This was evidenced a lot last year in the school he was at. We got so many reports of him saying things that upset other people. When I talked with Max about this I would say “The principal says that you upset Jenny today by talking about something upsetting to her that she asked you not to talk about.” He would say “No I didn’t.” Me: “You didn’t hear her tell you to stop talking about that subject?” Max: “No. She was fine. We were just talking.” Me: “You didn’t notice that she was getting upset?” Max: “No, she was fine.” Me: “So you don’t remember her getting upset and crying?” Max: “Well, I don’t know. Maybe.” and I would see him trying to remember the scene. I’ve seen this constantly with him since he was a small kid playing with others. I always said “He just doesn’t think before he talks. He doesn’t mean to hurt other people’s feelings.” and this I believe was true – that he didn’t mean to hurt their feelings. When I would explain how upset he had made another child he would feel bad. But for a long time it was just written off as the usual developmental stuff of little kids. They all make each other cry sometimes. But as he got older and other kids weren’t doing that so much – Max was still doing it. I have always explained it as an inability to filter his thoughts, an issue of impulse control. Which totally fit with a diagnosis of ADHD. However – this week I feel like veil has been lifted and I’m seeing these behaviors in a new light. I am looking back over the years and it is so powerfully obvious NOW that he’s always had trouble reading people in social situations.
There’s another aspect of this – being able to read animals. Max is very poor at reading his own animals. He loves them all so much – he likes his animals more than he likes most people. He would never want to hurt them. Yet he is constantly picking Pippa up and not recognizing when she’s giving the message that she’s done. She’s a magical being and will often, after struggling to get away, give up and just go with it. So Max doesn’t see the struggling as an indication that he should let her go. Her meowing isn’t her saying “put me down”. He just doesn’t see it. I tell him over and over again. He suffocates her with love. Not literally. Except that something I’ve never said out loud is that I DO worry that he’ll hurt one of his animals by not recognizing that he’s holding them too tight or that he picked them up without giving proper support and their objections don’t register as pleas for him to be more careful. Max would be devastated completely if he ever hurt one of the animals. But he continually has trouble reading them.
Most troubling is with Chick. He overwhelms her and makes her nervous when he hovers close to her face with his whole body trying to give her love and attention. She’s curl her lip and he doesn’t notice. She’ll trying backing up but he doesn’t notice this is her body language indicating that she’s uncomfortable. Then she’ll snarl at him loudly and that will get his attention. Just like he doesn’t recognize human signs of irritation until it becomes anger and they yell at him or snap at him. Chick has never bitten him but I get worried. She’s getting older and crankier and a lot more startle-able. I’m afraid that one day she will actually bite him. So far she has always immediately forgiven him and she isn’t ever nervous around him except when he gets in her face or into a corner.
I need a name for Max’s collections of oddities and impediments. Maybe it’s my OCD need for categories and labels and order. labels make things easier to discuss in a succinct manner.
Also: ambiguity literally fills me with fear and rage.
I have a name for that issue.
And that calms me down.
So I’ve been doing all this research and I am becoming clearer and clearer and seeing things in a new context and suddenly – there’s something that explains absolutely ALL of Max’s quirks, issues, problems, behaviors, challenges – I have found his tribe. Is he severe enough to actually get a diagnosis? I think he is. I need more help and support. Desperately. I am 99% sure now that Max is on the high functioning end of the autistic spectrum. In that context my son makes absolute and total sense. My goal is to find his tribe and to learn from that tribe how to help Max succeed as a person in a world that is terribly uncomfortable for him. I need to know what to call it – this thing that makes everything that is a mild parental challenge for others into Mount Kilimanjaro to us.
I have written this exhaustively long post mostly for my own benefit – to record the new information I’ve been collecting and the reasons I think it’s pertinent. I am not going to go back to the psychologist until I have enough information so that I can ask him the important questions, so I can be informed and well prepared to have a real conversation about this. I am not going to accept some meagre dismissal of my suspicions.
I will end this post by sharing what Max “learned” at the all day field trip he took to the woods with his science class yesterday which ended with his usual rants about religion and the odd comment that if he was a character in Star Trek he’d be a Vulcan because he’s really logical. I pointed out that he’s too hot headed to be a Vulcan.
What Max “learned” from the all day science field trip to the woods: Nature hates human beings and is scary, snakes having the venom strength to kill ten humans is proof, it is hot and stupid today, food that goes on hikes in the heat is inedible, cola tastes like “ass”, and there are way too many bugs in nature.
I keep updating this post to reflect even more reading and comparing.
Sources for my reading on the subjects of Autism, Non-Verbal Learning Disorder, and Asperger’s Syndrome:
National Institute of Neurological Disorders and Stroke Autism Fact Sheet
National Institute of Neurological Disorders and Stroke Asperger’s Fact Sheet
The Boundaries Between Asperger and Non-Verbal Learning Disorder by Bonnie Forrest
National Center for Learning Disabilities – Non Verbal Learning Disabilities: A Primer
My friend Sid who has worked in the the mental health field went over the DSM criteria for Asperger’s Syndrome and we found that Max met the criteria in the current DSM. However, the new DSM does not include a separate diagnosis for AS and so I don’t know if Max would meet the new criteria or not. Here’s the DSM IV criteria:
Asperger’s Disorder – the DSM criteria reprinted with permission on BehaveNet
Sid shared this link to an article about the new DSM and its absence of a separate diagnosis for AS:
American Psychiatric Association Approves dsm 5 Revisions
My Asperger’s Child: Asperger’s versus Non Verbal Learning Disorder (most clear explanation of differences between the two and definitely corroborates my belief that Max has Asperger’s and not NVLD.)
Nonverbal Learning Disorder or Aspergers by Adrienne Warber on Lovetoknow autism (Again – this confirms my suspicion that Max has AS and not NVLD – the obsessive interests are a key difference and also Max has no difficulty reading and retaining information, Max did not pretend play as a little kid, has problems with nonverbal communication but can learn with other forms of communication.)
*The DSM is changing things so that Asperger’s will no longer be a separate diagnosis from autism – they will be under the same umbrella – the “autism spectrum”.