Thank you. This means a lot. Truly.
I’m so glad my family let me read anything. I remember trying to read Judith Krantz’s Princess Daisy when I was small because it had a catchy title 
. They didn’t care.
I’ll read whatever he brings me. I’ve read him Nietzsche. His Dad reads him X-Men. We definitely won’t limit his reading materials.
Generally speaking the school district is not really supposed to diagnose the medical condition. They can identify that disabilities in verbal and nonverbal communication and social interaction that could impact educational performance are present, and/or other ones, and, after age three offer services to ameliorate the impact on educational performance. Before three it is covered by Early Intervention programs, which are funded and staffed differently (often a hybrid of public/private). The medical diagnosis is best made by a team that may include a developmental pediatrician or a child neurologist, and often includes standard assessment tools like the ADOS-2. The waitlists to get those comprehensive assessments are often very long. Which I am sure you can educate me about!
Personally I go a bit against official partly line which is very gung-ho on the importance of labeling as soon as possible. To me the label is one path into getting appropriate intervention but it is the intervention that matters, whether a child fits criteria for a specific label, now and/or later or not. Services can and often do come first with label to be determined later. Labels can be useful shorthands but any individual is not that label: they each have their own unique sets of strengths and weakness, labeled or not.
As a goal for its own sake it is at this age trivial. As a possibly fun shared interactive social activity it is anything but. The point to remember is that the fun shared and social are the important bits, much more than the skills themselves. That’s why your being willing to read whatever he brings, be it Nietzsche or X-Men, is such brilliant intuitive parenting.
This makes sense. The issue for me is I don’t fully know what’s in the range of neurotypical and I know he has delays but not the extent of those delays. He can’t have a conversation - does that put him three months behind? A year behind? What kind of supports is he going to need? Two therapy sessions a week or several hours a week? That’s really where I’m struggling. And I just want someone to be able to sit down with me and say, even if he doesn’t have a label, “There’s a moderate delay in this area which we can address in XYZ way” or “this is really not that far behind and there’s something you can do from home to help him catch up” because right now we just don’t know. He needs to be evaluated on basically everything. At a bare minimum, I know he is delayed socially, in communication, and gross motor, and then of course there’s the severely restricted eating. But I don’t know how delayed he is in these things, or what we can do about it. That, for me, is the hard part.
And here is where I have to echo @raspberry_hunter in pointing out how ahead of most you are in realizing that. Plus your OT’s guidance on the sensory stuff is likely a step up on any care plan too.
I hope a virtual hug is not considered transgressive…
Hugs right back. Much appreciated.
my problem was no one knew I had specific problems until the 4th grade … for some reason I read faster than I talk and about the 4th grade is where I ran into trouble because for some reason I can’t do anything like typing without reading the letters … so it was a circle until my hs english would say "well you can read very fast … just slowly read the last 5 pages so we could understand it … and it would take 20 minutes I just couldn’t process the speaking and reading at the same time
My brother learned to read from my mom, and liked to read Time magazine and other easy adult fare. As a result, he was bored by the reading material in elementary school and refused to read in school. My mother was called in to talk to the teacher about his not having learned to read by third grade. She convinced them to give him something more interesting to read, and voila, it turned out he DID know how to read after all.
I remember in early grade school, they didn’t even have me do the standard reading curricula. I got to go off with a volunteer lady and read whatever I wanted - which was Shel Silverstein. I have a deep affection for his poetry books and I’ve read them to my son. Last year, he was so into being read to, he would sit and let me read the whole book.
A little more progress today. Dad is going maybe five or ten minutes at a time to teach him how to sound out words. He got H-A-T. Pointed to the hat on Uranus in his planets book (it’s wearing a hat because it’s cold.) Then he got B-A-T. Picked up his stuffed bat.
Some words he has memorized. Then he lost interest.
We read Slug in Love, which is language at a more basic level than most of his other books. I tried to sound out some of the words and take my time pointing to the words as I read. He was more interested in Gail the Snail than anything else. He thinks Doug the Slug is a snail, and I’m not sure how to explain to him the difference! (I love mollusks. Someone once asked me if I liked snails as well as slugs. I said, “Of course. They’re introverted slugs.”)
Just echoing what some others have said, you really are doing much better than so many parents.
Last year, one of the kids in my four- to five-year-old class who is on the spectrum really changed over the course of the year because the mother took him for occupational therapy once a week. Not only did he learn how to control his emotions better, he really made significant progress compared to the rest of the class in reading and he was completely different socially. He still is neurodivergent, of course, but such a different boy.
Remember that you are in for the long haul, and many small steps are better than big swings and misses. If his limit is five minutes, then it’s five minutes.
There are many games to help kids learn to read. For example, one game that many kids that age love is the have pictures of spiders and candy. You can hide a picture of candy under a 3 X 5 card with a target word and hide a picture of a spider under another card. So, say the candy under “hat” and spider under “bat.” Then you say “hat” and he gets to select the card. You get the other.
Another game is to write a number of pairs of words on 3 X 5 cards and play concentration. Put them face down and have him try to match the words. If he can say the words, he gets to keep them.
Make the games short and fun and it’s easier to keep them interested. If there is a book he loves to read then you can use the words from that.
Thanks @DSeid! You are right, the word “diagnose” was inaccurate and I shouldn’t have used it.
No, I agree with everything you’re saying. But the label was also important to me, personally, because up until I got the label I’d been rather “there’s nothing wrong with her, she’s exactly like I was as a kid, just… a notch up.” I honestly did not realize the extent of her neuroatypicality until “getting the label,” so it was useful to me to realize, oh, she’s going to need some supports that other kids might not. (It also made me realize some other things… like… apparently most people don’t need to learn consciously to look at other people’s eyes?? Which I totally thought most people had to learn consciously like I did??)
Now, if you are awesome like @Spice_Weasel and have already figured all this out, then the label itself is not so important, as you say 
(Tangentially, there’s also a BIG divide between parents I’ve talked to about whether to disclose to the child, and a lot of parents are afraid of “labeling” their child. I have always been open with Older Child that her brain works differently than many other kids’, which of course she’s noticed herself, and it means there are things that are easier for her and things that are harder for her than most other kids, and there are a couple of words people use to describe it, but (I hope) not in a “label” kind of way.)
But I also came back into the thread to address the original question, because although it’s gone a bit afield, I wanted to drop in a list of actual evidence-based cites for phonics vs whole word/balanced literacy/Lucy Calkins. (This is something I feel super strongly about because I LOVED seeing my children learn to read and it just breaks my heart that so many kids are being left behind by a terrible curriculum.)
Emily Hanford has collated a reading list. I have not checked them all out yet but what I’ve looked at so far looks good. I am planning to read the Seidenberg book.
She also has a podcast about how balanced literacy took hold (and from which I got the reading list). The podcast itself doesn’t have proper citations, however. I had to take a break after the first two because I found it too intense.
I’m late to the discussion and haven’t read all the replies, but one thing that’s always mentioned is reading out loud to your child. I remember my mom reading to me and moving her finger along the page under each word as she read.
eta: Actually I remember her doing this with my younger sister. I assume she did the same thing with me.
You are not alone in this. I didn’t know how little functional language my child had at 4 years old. She had a SEVERE speech delay. And we just did not know. But once she had the “label”, she got the help and, now, at 8 years old, she only has articulation goals in speech therapy.
That seems sensible to me. I often ask myself how I’m going to explain his strange behavior to random people (my worries tend to latch onto social situations), but I don’t want him hearing a constant narrative of how weird he is. I mean, I’m quite weird, so I think weirdness can be a celebratory thing, and I love his particular brand of weird. He’s become obsessed with our toaster oven countdown timer and I can’t even imagine being as excited about anything as he is about the toaster oven.
But in some cases, it would be, “He’s ignoring other kids because of X label,” not so positive. Or ripping toys from other kids’ hands because he doesn’t understand the concept of co-operative play. It’s there where I would want to say, “It’s because he’s autistic,” to alleviate my own discomfort, but I have to give pause because that’s his personal business, really, and I don’t want him to constantly hear that and think there’s something wrong with who he is. So maybe I can say something like, “We’re working on it.” (Some specific skill.)
As for himself, I’m neurodivergent, I get it to some extent. I was also the weird kid who didn’t engage much with other kids my age. Part of it for me was my intelligence being so outsized for my age and that might be a factor for him as well. For me it was hyperlexia and for him I’m pretty sure it’s hypernumeracy. I don’t understand all of his difficulties, but I do understand the appeal of having your own little world entirely under your own control. I am a fiction writer after all.
I will say that it can actually pretty useful for other people to have a categorization like that, not just to alleviate your own discomfort. When I started being more open about Older Child being on the autism spectrum, I think it helped people understand her and our family, and helped those families be able to educate themselves and their children as to why Older Child ignores them, etc. Because there are times when if a neurotypical (especially girl) child displayed that behavior/body language (a lot of ignoring, not looking at people, etc.), it would mean that she was being a mean girl. But Older Child doesn’t, of course, mean it maliciously at all. And it’s helpful for others to understand that, and the label honestly does help people with understanding “oh, okay, this means it’s the way she is, not that she’s doing whatever on purpose.”
But I usually don’t talk about it all that much when she’s in earshot, to be fair. (I did once talk about it at church in a public setting, but got her permission first.)
Twice exceptionality for the win! As he gets older you will want to look at places that support twice exceptionality. (I’m right there with you. Older Child is also phenomenally good at math (I was on the math competition circuit in high school and all of that, but I was never like her). I almost feel like all the circuits that in typical kids would be used for social and emotional stuff, in her all got shunted to math.)
Ha! This was me, too. She said I just didn’t talk until one day I said “Mommy, Carla chase the kitty.” Carla was our dachshund. I do remember thinking I didn’t want to talk until I wouldn’t be laughed at it. It must have been a powerful feeling for me to remember it.
Actually, this would have been about mid-60’s, so predates the push to whole word, I would think. I assumed the purpose was to originally show that whole word worked. Picking subjects who were already good fast readers kind of skewed the results to show what they wanted, that they could crank up the flash speed and the readers would be able to keep up.
My later musings assumed it was the pioneering effort to impose whole-word. It was about the same time as “new math”. IMHO the OISE and similar academia were taking the elitist view - “we know better, get out of the way, parents, and let us teach it the proper way.” Hence, the point that everything you taught your kids how to read was the wrong way, everything you taught your kids about math was also the wrong way.
This was the 60’s, the age when “the future’s so bright, I gotta wear shades” (OK, that was the 80’s) and nuclear powered flying cars were only a generation away, we could come up with a pill to cure everything, and 3 more expressways would solve the traffic problem. Nobody made a name for themselves by saying “oh look, we’ve been doing it right all along!” To make a splash, you throw out the bathwater and the baby and start making a new one. So these self-important educational researchers decided the past was totally wrong and they were to solution to everything.