Dad of 4, new here

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Hi all,
New here and looking around. This seems like a nice place.
I have 4 kids aged from <1 to 7 years, love them to bits but it can be a challenge sometimes and it seems that part of the reason for that could be that one or more of them are somewhere "on the spectrum". I might be some kind of mild HFA as well.

Came here because I'm interested in:
- finding practical ideas to help my kids be happy, grow, learn skills they'll need etc
- homeschooling (already doing it but want to do it better and with more challenging kids)
- being the best father I can with my limitations, to my kids with theirs
- kids growing up bilingual
- possibly more later

Not interested in:
- details of healthcare or education systems
- getting "professionals" of any stripe involved at this point
- diagnosis for its own sake (but perhaps a description of behaviours is needed for meaningful discussion to take place?)
- any member of the family becoming more "normal" - just happier and more competent at navigating this amazing, imperfect, sometimes infuriating world.

I've had a look at some of the stickies around here and some other sub-forums, seems like there is lots of useful info around though it will probably take me a while to locate and process the particular grains of gold dust that I'm after.

Any suggestions on where to start much appreciated.

the main thing is to keep them away from the bullies.
Homeschooling is good.
I wouldnt feed them wheat if I were you. Just search for Dr.William Davies...

When they get a bit older show them the job search on the internet and get them to find a job they might want to do.

Make sure they hangout with other aspergers kids in real life.

Welcome! Glad to have you here.

I found the book Parenting Your Asperger Child by Alan Sohn to be a good starting place. He gives very good descriptions of "subtypes" (his own categories, not official subtypes) that might provoke an "aha" moment about some of the things you've noticed about your kids.

Lost at School and The Explosive Child by Ross W Greene detail a very good approach to solving problems with kids who are differently wired. (Lost at School is definitely applicable at home, even though the examples are in a school setting.) He also has a website with a ton of free videos at http://www.LivesInTheBalance.com.

Hello and welcome.

Becoming more competent at navigating the world usually involves learning how to pretend to be "normal" in certain circumstances (job interviews, for example).

^^^^

What she said. It's not just job interviews. It's daily life.

You have to function normal-ishly if you want to have friends, or a marriage, or kids, or keep a job once you've gotten through the interview.

Unless you are a self-reliant survival farmer with a hell of a lot of land (enough to give a 20-acre parcel to each of those kids, say) and a very insular community that is going to tolerate spectrum behaviors in people simply because they are members of the same town/church/MAG/gun club/whatever, then "being normal" is a necessary skill to navigate the world.

Thanks all for the nice welcome.

slenkar: yes, bullies are definitely a concern though of course the ultimate aim is for them to be mentally / emotionally resilient enough for it to become a non-issue. Re. the wheat thing - is there a specific connection to autism, or is this a general nutrition thing?

zette: Thanks, will have a look. BTW it seems to be http://www.livesinthebalance.org/ rather than .com

Yippi & Buyer: I think we're on the same page here, guess I didn't express myself too well. I'm perfectly capable of holding down a reasonably well-paying job, providing for a family of 6, etc, and of course I want my kids to be able to do that too (if they want to) if at all possible. But I've never considered myself "normal" - actually for me, that word carries connotations of mindless conformism-for-its-own-sake. So I'm not aiming for my kids to grow into adults that are more "normal" than I am (having said that it looks like my eldest is becoming a way more sociable person than I ever was, and of course that's all good). Also, when I was a kid I was way more socially maladjusted to than I am now, and still it turned out fine. But of course this was may years ago and perspectives change, so it's hard for me to tell if my kids are currently on a trajectory that reliably leads to "highly functioning, if somewhat odd individual more-or-less like myself", or on some kind of road to misery where I need to somehow steer them towards a better outcome. This is basically why I am here.

I'd like to get down to nitty gritty and describe to any who care to read, my son "DM".
Age 5, second of 4 kids
Beautiful heartbreaker - his million dollar smile melts hardened adults like snowflakes in a blast furnace.
A healer - few things can soothe your soul like getting a hug from this boy.
Physically big and strong (since we've already mentioned bullies: one bully may hurt DM's feelings but hurting his body will take several bullies).
Did I mention I love him? Getting all emotional just writing this.

Now for the "difficult" bits:

Social interaction.
DM has no friends. At meetups with other homeschooling families, he rarely plays with the other kids. When it does happen it often ends with them getting annoyed with some of his behavior patterns. With siblings it's better but they have trouble respecting his space. Often it looks like he just wants to sit by himself and play with his stuff, but both his older sister and younger brother are more like "I need to be involved in absolutely everything that goes on anywhere near me" so it leads to a lot of fights.
It seems that he does actually want and need company - of the right sort. If we just keep the siblings out of the way and let him play by himself for a long time he usually gets sad and cranky after a while. Also, if someone approaches him in the right way he's completely open and charming.

Speech.
DM does talk and he does understand (mostly), but he rarely does conversations. Completely ignores strangers with their usual "hey sweetie, what's your name, how old are you" routine. With my better half and myself he sometimes ignores what we say, sometimes replies by saying something completely unrelated, sometimes speaks extremely quietly so that it becomes impossible to make out what he's saying if any of the siblings make the faintest noise, and sometimes replies in normal fashion. Getting an answer to a simple question has become more difficult recently.
Example: "DM, I've heard your screaming and I can see you want something from this shelf up there. If you tell me what it is you want, I'll get it for you" - Deafening silence - "OK, whatever, just point at what you want then" - No reaction - "OK look DM, I don't have time for this, need to help your sister with her arithmetic and wipe your little brother's a** and clean up the kitchen. Sorry" - Unintelliglible screaming promptly resumes. About an hour later it becomes clear what he wanted, and I KNOW he knows the word for it. Drives us up the wall sometimes.
DM also talks to himself and/or nobody in particular quite a bit, usually quoting lines from some song, book or movie that he likes. Pronounces some words in somewhat idiosyncratic ways that can make it hard to know what he means, especially for people outside our immediate family (this has improved over the last year or so - it used to be that people thought he was speaking another language).
He obviously understands most of what we say to him, but there may be gaps and we can't tell where they are because he won't ask "what does this word mean" or such.

Obsessive / narrow focus
Wants to eat what he wants to eat and nothing else. It's usually a list of about 10 different things, but he has been known to happily subsist on just one particular type of fruit for a week or more. Hunger will not make him try other foods. The focus occasionally changes but overall, has become more narrow over the last 2 years.
Outside the home he is somewhat more willing to try foods that he used to eat but has not eaten recently, or even completely new foods. OTOH he is also the first of my kids to say "let's go back home" when we're out.
Wants to wear what he always wants to wear and nothing else. We generally let him, but when that's not practical (e.g. too cold outside, broken glass on the pavement incompatible w/ walking barefoot) we have a struggle on our hands. It has become easier recently, he now usually accepts newly bought clothes into his wardrobe if they are similar to others he wears, and my better half draws one of his favorite cartoon characters on them with permanent markers.
"Rituals": e.g. when getting in the car, it's very important that _he_ close the door _immediately_ after getting in - even though he knows full well I'll open it again 1 second afterwards to put the seatbelt on. If I forget, I get a good few minutes of screaming. "Sorry, I forgot, here you go" does not help. This is no big deal in itself but there are other kids also needing attention, and there's more rituals like that.

Personal hygiene
This has improved a lot over the last couple of years. When at home, everything now ends up inside the toilet bowl or (sometimes) very close to it. Still, sometimes his fingers have a funny smell on them... Also, when outside, he has trouble choosing the right place - e.g. peeing in the bushes around the edge of a playground rather than right in the middle where all the other kids are playing. If I can tell he is "under pressure" as it were, and I find the right way to steer him gently in the right direction, he'll comply. If I'm pushy about it - screaming and no shortage of funny looks from the other parents.

Socially inappropriate behavior
Likes to scream for no apparent reason (these screams sound different from the "I'm upset" type screams but it unfortunately the neighbors still don't enjoy them much)
Took him a long time to keep his private parts, well, private. "Nudist tendencies"


Guess I better leave it at that for now before y'all get TL;DR syndrome.
Any further comments much appreciated.
My plan is to ask more specific questions later, but I wanted to first give a general impression of who I'm talking about.

I can relate to this. As a child, I was just like DM. My son, who has high-functioning autism, is just like your son's siblings. He is very outgoing, but with poor social skills.



I used to do this as a child, too. I took "don't talk to strangers" very literally. Black and white thinking.



This is called echolalia, and is common amongst people on the spectrum.



If your family doesn't interact regularly with other people, this could be a form of twin speak.


Reading your entire description, it sounds like your son has more than a touch of autism. I really think you do need to get him evaluated. I think that, without intervention, he is unlikely to grow up merely "quirky" and more likely to grow up unable to take care of himself.

Disclaimer: I have no kids and can only speak from personal experience.

Many of the skills that spectrumities have trouble with are totally learnable, but might require a lot of deliberate practice. Executive skills (e.g. for kids, like how to dress for weather, how to clean their rooms, how to remember their keys and school books when leaving the house, how to turn in assignments on time) and social skills (e.g. how to recognize when someone is sad, what is the appropriate response, what did they mean when they said that and what did they want you to do about it) are something NT kids are expected to just pick up by example or by trial and error. ASP kids might need these things be spelled out to them with great explicitness and frequency. E.g. "She is feeling unhappy now. That means feeling like ... You can tell because ... You could do ..." or "We're going to clean up this room now. Cleaning is important because ... Let's start with gathering all the dirty clothes and putting them in the hamper. This is how you can tell that an item of clothing needs to be washed ... and they go to them hamper because ...". Not "Why did you upset her?" or "Go clean up your room. Why haven't you done that yet?" -- they don't know either. A lot of these things kids are supposed to just infer. Actually I think that even NT kids could benefit from these kind of explanations. In that sense it's not special education, it's just more structured learning.

The skills that took me longest to develop and I would have benefited most from learning at a younger age are executive skills (like time management), study skills (really came to bite me in university), emotional skills (like stress management and dealing with frustration) and social skills. I was getting by well enough in most areas until my teens/late teens, but after that the expectations of school/work rose steeply and it became harder and harder to compensate for my difficulties until it was just impossible. I've learned though. I've developed a system of some sorts for everything I've mentioned in this post (and btw, that's one of the most useful things I've learned, the ability to granularize any problem and develop a system to deal with it). Many things have taken around a decade of focused practice to learn, which makes me wish I had learned them in my teens instead of my twenties. Would definitely have saved me a lot of frustration/heartache/tears.

Something I want to mention, although it might or might not hold for your family, is sports. For me, exercise is the miracle drug for attention and sensory problems. Miracle I tell you, my sensory problems completely disappear somewhere around 10 hours of exercise / week. Sports are also great for social interaction outside school, especially if your kids are home schooled. It doesn't even have to be a team sport (I've never liked those and have done better with individual sports). It was a lot easier for me to connect with people over the shared interest than it was to find friends at school. At school I was bullied and bored out of my mind, at sports practice I was having fun and having it with other kids.

Bottom line: solutions are more important than problems. Focus on the positive things that are going right and find more of that. Try out different things. If it doesn't work, no big deal, try something else. Keep trying until you find something that does work. Believe that solutions exist, they are out there and you just have to find them. Huh--I think I just outlined resiliency.

Tried to edit this in my previous post, but couldn't any longer.

A diagnosis itself is not really useful or harmful. It might be necessary/useful though at some point for getting medical care or access to accommodations. I definitely agree that there are medical professionals who are less than helpful or even harmful in their approaches. But there are useful people and services too. You just have to sort the wheat form the chaff. Trust your gut and discontinue immediately if someone/something seems wrong/harmful. There are also many types of services not directly medical, e.g. life coaches, student services, special accommodations at colleges/universities, third sector associations, peer support groups, etc. that a diagnosis can grant access to. In my experience the doctors have had only instrumental value, namely granting access to the actually helpful people. Sometimes even with a diagnosis you have to fight for your rights, but without that black-on-white the fight might prove impossible.

I am still learning and need to learn a lot more.


I do a reward system for behavior and academics
rewards do not have to be expensive
I have a note book and my two kids do specific things they get smiley faces I draw in a notebook.
to earn apps, or gum
I also give extra prizes for bigger goals like read four books and get to stay up late on a Friday or a sticker book. Prizes very for child.
I also give prizes they can share to teach sharing.

I am always on the lookout for new ideas.
libraries have inner library loan and amazon has used books.
I found joining the scholastic book club through my kids school helpful in getting reading materiel. I have heard of some homeschoolers groups contacting and joining.
I go through their website because it gives me access to multiple catalogs.

List your kids hobbies
Maybe a hobby will lead to friends

My AS child is social but because of language issues finds it easier to make friends with kids with other disabled children.

I went to speech online stores to make my own products.

Thanks all for reading and replying in detail.
Re. getting DM evaluated, I'd like to clarify a bit.

As Eir says:
"I definitely agree that there are medical professionals who are less than helpful or even harmful in their approaches. But there are useful people and services too. You just have to sort the wheat form the chaff. Trust your gut and discontinue immediately if someone/something seems wrong/harmful. "

This is pretty much what I want to do, but it will need a bit of preparation. One part is actually being able to sort the wheat form the chaff. Right now my better half and I know so little about autism that we can't really tell one from the other. Gotta learn as much as we can about that, and quickly!
So, those of you who have received any sort of treatments around about age 5, I'd love to hear your stories - what helped, what to avoid, etc. Feel free to post links etc as well.

Another part is actually being able to "discontinue immediately if someone/something seems wrong/harmful" as Eir says - and this is where I get a tad paranoid. See, I don't really understand the healthcare or education systems where I live because I only moved here a few years ago. I do speak the language reasonably well, but
not well enough to hold my own against a medical professional. In the past I've gotten bad medical advice for myself and ended up saying something like: you think whatever you like but it's my body and you can't make me do stuff, bye now. It worked but may not work for DM, because they may be able to do all kinds of stuff against our will if someone somewhere declares it's "for the benefit of the child". I don't know what exactly they legally can and cannot do but I've heard some scary stories. My better half grew up around here and doesn't have the language barrier, but finds it hard to stand up to "the system" for other reasons. Still, overall she does a better job than I do so it will most likely be her doing the talking when the time comes.

As things stand right now, I think it would be irresponsible for us to just go to the nearest specialist and hope for the best. For all I know, they might send DM to some kind of evil meatgrinder where he'll come out far worse than he is now. Or get us to spend megabucks on some useless snake-oil miracle cure that said specialist's buddy just happens to be offering. Or whatever.
So we need to educate ourselves re. how the system works before we jump in. Seek out other local parents of ASD kids, and all that. We also know someone who works in a daycare center for autistic kids, will talk to them as well.

So yeah, that probably came off more than a bit paranoid, but there you have it.
I know y'all are just random strangers off the internets, but I trust you more than I'll ever trust a doctor because you have no power to coerce me or DM in any way, and no opportunity to make any money off me. I also think y'all may well give me better advice than so-called experts seeing as most of you have "been there" as ASD kids and/or parents of ASD kids. And if you think that's crazy, so be it.

Any healthcare professionals who may be reading this: if any of what I said offends you, please accept my apologies and go elsewhere.

I'm actually a healthcare professional, but I've got experiences from the other side of the fence too, so there you go.

You might want to contact your local non-profit organization. They could help clarify how the system works and could even recommend specialists. They usually have peer support groups, mailing lists, etc. which could be a good way to connect with other parents and ask around.

What country are you in? If you do go for testing, make sure it's someone certified to perform the ADOS (autism diagnostic observation schedule.)

5 is a tough age for ASD kids. NT kids are developing so quickly in many areas at that age, and it just doesn't make sense to adults looking at this 5 yo kid who in many ways is still acting, communicating, and playing like he is only 3. Also the gap between what he wants to do and what he can do or can tolerate can be very big.

This jumped out at me, because at 5 my DS would've had problems with it, too. At that age I found we had to keep things very short and very direct. I told his preschool teacher that, "I can't have you standing on the table because it isn't safe, and my job is to keep you safe," should be shortened to, "Get down. No standing on the table."

Shorten "DM, I've heard your screaming and I can see you want something from this shelf up there. If you tell me what it is you want, I'll get it for you," to "Which one? Ball? Book? Lego?" Either pointing, or physically picking it off the shelf. You also have to leave a looooong space for response. Perhaps "Ball? Yes or no? ......... Book? Yes or no?........."


The food issues is a really tough one. There is a therapy called Sequential Oral Sensory (SOS) that OT's use to introduce foods gradually. You can read about it in Food Chaining and Just Take a Bite. We tried it without any success, but others I know had better luck. We've largely given up on making headway with the picky/problem eating. It might not be the problem you want to focus on right now.

At age 5, the name of the game is accommodate, accommodate, accommodate. It's going to take awhile to figure out what sensory issues are bugging him and how to help. You have to reach a place where you've solved the constant meltdowns before you can slowly begin to teach skills, one or two at a time.

If you can establish a place in your house where the rule is that the siblings can't bother your DS, that might be helpful.

Keep the questions coming!

zette, Thanks! So many leads to follow up on.
Let's stick with the "can't say what he wants" scenario just a wee bit longer.

Although I usually take pride in saying exactly what I mean and meaning exactly what I say, I have to admit I used quotes in an inappropriate way here. What I actually say to DM is far less verbose, pretty much what you suggest. I added all those extra words for the benefit of anyone reading this, so as to provide the context. I should have put those words outside the quotes. Mea culpa, I hang my head in shame

But it would really help me if someone could spell out for me how this whole scenario looks from DM's point of view. You see, I find it hard to see people engaging in obviously counterproductive behaviors - makes me want to scream "Stop! Think with your *brains* people, what do you have them for?" or worse ("f***n idiot" and the like) - of course I try my best to not let insulting words come out, but the sentiment remains. It's not that I don't do counterproductive things myself, but I think I can honestly say that I do stop immediately as soon as I can see a better way. I don't keep it up for the sake of pride or anything like that. The problem is that it sometimes takes a very patient person to point out that better way to me, when I'm all enraged and said "better way" is actually so painfully obvious that people find it hard to believe I honestly didn't see it.

So with DM, his unintelligible screaming looks highly counterproductive to me. So far I've basically assumed that he knows he's being counterproductive, and that he could do better if only he chose to. I mean, I know he knows the word for what he wants, I know he's capable of saying it, I've told him many times that I can't make out what he's saying when he's screaming at the top of his lungs...
I guess I was wrong, but would like to understand how exactly. Need some "theory of mind" I guess, to better relate to him.
Does he think I can understand his screaming?
Is he somehow physically incapable to stop screaming?
What's going on?
Are these the famous meltdowns that I've seen people talk about? I did watch some Youtube "tantrum vs meltdown" vids but it didn't help, all seems the same to me.
I'm probably being dense but there you have it.

Oops, foot in mouth again! Hope I did not offend you.

I guess I'm a bit weird that way. I have this fantasy that a healthcare professional whom I visit for the first time would introduce him/herself thusly:
"Hi my name is suchandsuch, and technically I have a vested interest in people being sick. If all diseases were somehow automagically eliminated off the face of the earth, I would lose my job and possibly my house and nice big car. I'd have to learn some other way to make money and probably end up making less than I make now. It would suck for me. So if I was in your shoes, I would not necessarily trust me or any other part of this here healthcare system, because there is a fundamental conflict of interest between us. You should also be aware that there may be laws and regulations requiring me to do things to you / your kid that I personally disapprove of, but if push comes to shove I'll do those things anyway because frankly, feeding my family and keeping my nice big house is more important to me than you are. Now, do you still want to go ahead now that I've said all this?"
I'd get all teary eyed and instantly trust this person.

If I woke up tomorrow in some alternate universe where I was a doc, I would probably introduce myself to patients exactly like that - thoroughly alienating everyone around and resulting in my prompt dismissal.

I'm new to the ASD community, is this what people around here mean when they speak of "aspies being suckers for brutal truth?"