Would it be ok to ask how you're knowledgeable about this?
We have a four year old (almost five), who we think exhibits many of the traits associated with autism and/or ADHD. Since day 0 of his life, he has been "difficult". He could not breast feed. He screamed more than other babies. Loud sounds, any cold sensations, etc all bothered him extremely. We couldn't really live a normal life because he cried so much, all the time, everywhere. He still can't walk on cold floors barefoot. He is extremely emotional and volatile. The slightest thing that doesn't go according to plan will result in a hyper-ventillating breakdown. He is angry all the time. He has an obsessive need for answers and will not accept "we don't know". He has poor gross and micro motor skills. He can't ride a bike and we struggle to help him learn because if he does not get something immediately, then the extreme anger and breakdown occurs. His writing is poor.
However, on the other side, he can be exceptionally caring. He loves his close and extended family. He loves sitting on laps, chatting away. He can communicate well, no issues talking. In fact, he never shuts up and will always be wanting to communicate about something. This actually causes problems because he cannot help interrupting and cannot wait. He sleeps very well, far more easily than average.
So it is difficult for us. We're trying to get him seen and potentially diagnosed, so that we can hopefully learn strategies to help him live a happier life. But because he isn't "typically and obviously autistic" we're not getting a lot of traction to even get him seen.
(This is just a rough summary, there are more behaviours we're concerned about)
munksbeer, please have your child evaluated by a developmental pediatrician. It will take a number of visits and if you are in the U.S. and it will most likely not be covered by insurance, but it is vital in helping you get the support your child may need. I am autistic and so is my child, growing up was hard for me and it is hard for my child, but we are able to provide them with a lot more understanding and affordances to make their life better.
We're in the UK, and we're trying. There is a lot of information around, and books written, on how to manage the process here in the UK, but the reality is that it takes a lot of time and constant pushing to eventually succeed in having your child evaluated. We're on the path though, thanks.
Updated: We have been fobbed off a few times already, so we're pursuing avenues with letters from his school and so forth. We are the parents and we know that he is not a typical four year old. We've known something was atypical since his first year. But he doesn't fit the stereotypical definition of what many people associate autism with, so we're worried he is going to fall through the cracks in the system.
In the UK, I got some support for this sort of problem. AFAIK my parents got a private diagnosis and then used that and letters from the doctor to build a case with the local authority. Local authorities are resistant to agreeing to anything because budgets are tight. I remember getting physiotherapy. This was 20+ years ago and the system may have changed
> Would it be ok to ask how you're knowledgeable about this?
When I was around 6, I resolved not to become one of those rubbish adults who doesn't know anything but thinks they do: since then, I've been paying attention. Apparently, most people don't know how to do that. (Having direct experience to pay attention to probably helps as well.)
I used to use myself as a baseline for my observations, rather than the less-variable "reference adult" I now use, so my understanding of children younger than 7 is not as good as I'd like.
> so that we can hopefully learn strategies to help him live a happier life.
There's no need to wait for a diagnosis for this: this stuff is well-documented online, and none of it is that hard, even if some allistics find it unintuitive. Don't get too attached to the idea that your kid is autistic, though: use what helps and discard what doesn't, because you never know. (Do not subject your kid to ABA, and never do anything that funnels money to fake, anti-charities like Autism Speaks,[8–10] but apart from that, go wild.)
I've provided some suggestions, in case you find that useful.
> Loud sounds, any cold sensations, etc all bothered him extremely. […] He still can't walk on cold floors barefoot.
Don't try to force him into uncomfortable sensory environments. Sensory issues can manifest as mere unpleasantness, or as actual pain, so either it'd just be torturing him, or it'd train the instinct to avoid unpleasant stimuli out of him: neither of these are good outcomes. (The latter can be really hard to deal with, later in life: for example, on out-of-routine days, I still have issues connecting "my hunger pains are starting to interfere with fluid movement" and "maybe I should have breakfast then, since it is 8pm".)
If he's getting better at dealing with barriers that prevent him from doing things he wants to do (e.g. deciding to tolerate the screaming of other children in order to play on the bouncy castle, stopping once the trade-off is no longer worth it), great! Keep doing whatever's helping him develop that skill. But if he's getting better at "dealing with" uncomfortable environments by internalising that his comfort is less important than other people's convenience, that's not so great – and it's something that loving parents can easily encourage by accident. I'm not sure how to distinguish between the two, but talking might help; and, as a parent, you can make sure you're not putting him in bad situations when you can help it. (I'd love to say "never", but parenting in an imperfect world involves trade-offs like "we have to wait quietly within the hospital" or "the school run goes past that shop with a Mosquito alarm that the owner won't turn off".)
If he gets as much practice with language as your description suggests, it might be good to start talking these issues through. Ask what sorts of things upset him, and what to do about them. The focus should be on learning how to describe and talk about issues, and finding accommodations that might mitigate the issues.
In-the-moment, you can ask what's wrong, find a possible mitigation (e.g. stepping outside for a bit), and ask if he wants to do that. In-the-moment, he might be too overwhelmed for that: see [0].
> He is extremely emotional and volatile. […] He is angry all the time. […] if he does not get something immediately, then the extreme anger and breakdown occurs.
Are you sure it's anger, and not a meltdown due to overwhelm? See [0]. Assuming it is anger:
There are some simplistic things you can do to deal with anger,[1] but this advice is a muddled combination of various factors. I mean, that advice works, I'm not knocking it, and it's as good a place to start as any, but you'll want to progress towards him noticing when he's getting angry, understanding why, and channelling the emotion in more fruitful directions.
Many autistic people struggle with understanding emotions, both others' and their own,[2] so talking through some algorithms to identify and respond to various internal mental states might be useful. For anger, talking about the reasons for the anger, then possible ways to resolve those situations (if actionable) or do something to calm down (if unactionable) or both (if actionable, but too upset to take the action just now), and setting simple rules like "we don't hit people / make loud noises when we're angry" ("loud noises" because shouting in anger is intimidating and can scare people: don't give any arbitrary orders about what is/isn't acceptable self-expression) can help. For frustration (i.e., when you want something to happen and it's not happening), asking about what's frustrating, commiserating, and suggesting a less frustrating thing to focus on instead, can help.
For the bike example… well, it depends on the kid, but I'd try explaining that riding a bike can take years to learn, because it's doing a lot of different things at once (balancing, pedalling, steering, going fast, looking out for obstacles), and suggesting to practice one of those individually (e.g. practising balance by trying to keep both feet off the ground for a few seconds while kicking forwards without the pedals – going as fast as possible helps), and that there are lots of ways to play with a bike, and he'll learn to ride it eventually. (He will learn to ride a bike, if he keeps at it, regardless of how bad his coordination issues. Perhaps not well enough to ride alongside road traffic, but if you can learn to walk, you can learn to cycle.)
Since he can write, he presumably reads. Perhaps he could read some books about this: Focusing by Eugene Gendlin[3] is a good one, though perhaps not that good for a 4-year-old. (You can stop worrying about this kind of age-appropriateness by age 10, though make sure at least one of his books is a big dictionary.) It's important to provide a wide variety of techniques and paradigms: no psychological models are correct, but some are useful.
Other people have provided some age-appropriate advice[4], and while it looks broadly like the right thing, I have some caveats to add. Keep in mind that many autistic people's emotion doesn't quite match your average allistic's emotion, and body language is usually quite different, too[5]. I'd be wary of telling an autistic kid what they are feeling. For unrelated reasons, saying things like "you're laughing, so you must be happy" that are not literally true is a bad idea, and might interfere with tickle consent[6]: "you're laughing, so I think you're happy" is much better wording.)
> When I was around 6, I resolved not to become one of those rubbish adults who doesn't know anything but thinks they do: since then, I've been paying attention.
I'm not sure I understand. Are you autistic yourself?
In any case, thank you for your lengthy and informative replies. We live in the UK, so our path will be different from the US. As the parents, our strong instinct is that he is not "just a typical four year old". We have known something was atypical since his first year. I am so tired of external people telling me how he is "just being a child". We have another child. We know what "just being a child" is. And I'm tired of being told to dismiss our instincts.
We know that a diagnosis won't solve anything, and that we can and are learning as much as we can to understand the way he perceives the world and what works for him and what doesn't.
> The slightest thing that doesn't go according to plan will result in a hyper-ventillating breakdown.
They're slight to you, because you have a more developed world-model. They're not slight to him, because they are the foundations of his reality. Talking about different things that can happen, different ways things can be, and their consequences, ahead of time – and then reinforcing that shortly before the change happens (W, so we're going to do X, so Y and Z will happen) – can make it easier to deal with. I'm not sure how much that'll go in, because he's only 4, but this can work with older children.
If these are his own plans going wrong and causing him distress, maybe it's worth teaching him how to plan for contingencies. That includes considering all likely possibilities (i.e., if A then X; if B then Y; if C then Z), and "I plan to make a new plan" for less likely events.
Techniques for managing anxiety might help as well. The general idea is to give him lots of tools with which to process the things he can't currently process. (One model is that autism is a lack of hard-wired, instinctive brain functions that allistic people have. This model is wrong, but sometimes useful.)
> He has poor gross and micro motor skills.
Sounds like dyspraxia, which usually means you have to break actions down into simpler actions and practice those simple actions a lot: sort of like learning a musical instrument. but for everything. Playing with blocks, arts and crafts, and lots of playing outside (somewhere where falling over is safe) can help reduce day-to-day clumsiness, but that will probably always be a difficulty. (I don't know much about dyspraxia.)
> He has an obsessive need for answers and will not accept "we don't know".
Are you sure he's not just playing a call-and-response game? (Does he get upset when you respond "we don't know", or is he just insistently asking questions?)
But yeah… gonna have to side with him on this one. You, as his parents, are his main gateway to the wider world, which is full of lots of really really really interesting things. "We don't know" just shuts down any possible line of inquiry. It's not actionable, even in theory. But knowledge doesn't come from parents: it comes from books, and experience, and science, and study, and we can (almost) always find out things that we don't know yet.
That doesn't necessarily mean you have time to find out the answers to his questions, right when he's asking them.[7] If you can explain that it takes time to find things out, you could make him a list for things he wants to know, and every time he asks something you don't know, you can get him to add it to the list, and then you can go through the list in your own time.
Make sure he can see the list, and add to it himself. If a lot of questions are about a certain topic, you could go to the library and find a relevant book.
If you describe some of the actual questions, I can suggest a more specific approach should you want it. (Some questions, like "how does gravity work", are best resolved by explaining how to do a physics experiment, or perhaps by telling the story of the Delft tower experiment, rather than by trying to explain Newton's laws and the inverse square law.)
Thinking of writing makes me think of school: has he started that yet? If he's going to go to school soon, and he has trouble with change, it might be worth making sure he's got a firm grasp on everything involved ahead of time, possibly including a visit to the school he's going to, so he knows what to expect. (You may be able to take advantage of moving up day.) But, again, he's 4: he might not remember a visit by the time school actually starts.
> This actually causes problems because he cannot help interrupting and cannot wait.
That just sounds like a 4-year-old to me: they're not known for their impulse control. Don't think it's autism-specific. Patiently explaining that it's rude to interrupt, and he should (e.g.) put up his hand and wait if he wants to say something while other people are talking, should get through after the thousandth time or so. (Make sure the thing to do is consistent: putting your hand up makes sense if it's the same as you do in local schools, since there'll be less re-learning and context-switching.)
> there are more behaviours we're concerned about
I can't promise I've seen it before, but your kid sounds fairly typical, so I might be able to give suggestions for those as well, if you like. Do check the websites I've linked first, though: relying on one source is a terrible idea, no matter how much I may think I know everything.
We have a four year old (almost five), who we think exhibits many of the traits associated with autism and/or ADHD. Since day 0 of his life, he has been "difficult". He could not breast feed. He screamed more than other babies. Loud sounds, any cold sensations, etc all bothered him extremely. We couldn't really live a normal life because he cried so much, all the time, everywhere. He still can't walk on cold floors barefoot. He is extremely emotional and volatile. The slightest thing that doesn't go according to plan will result in a hyper-ventillating breakdown. He is angry all the time. He has an obsessive need for answers and will not accept "we don't know". He has poor gross and micro motor skills. He can't ride a bike and we struggle to help him learn because if he does not get something immediately, then the extreme anger and breakdown occurs. His writing is poor.
However, on the other side, he can be exceptionally caring. He loves his close and extended family. He loves sitting on laps, chatting away. He can communicate well, no issues talking. In fact, he never shuts up and will always be wanting to communicate about something. This actually causes problems because he cannot help interrupting and cannot wait. He sleeps very well, far more easily than average.
So it is difficult for us. We're trying to get him seen and potentially diagnosed, so that we can hopefully learn strategies to help him live a happier life. But because he isn't "typically and obviously autistic" we're not getting a lot of traction to even get him seen.
(This is just a rough summary, there are more behaviours we're concerned about)