My Son’s Future

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My son, who is just turning 13 and starting Middle School, has recently been diagnosed with Mild Autism. He was diagnosed with ADHD five years ago.

The psychologist who diagnosed him recommended an IEP for him if he qualified, and otherwise a 504. We have started the process with his new school.

Also in the mix for him:
- He was premature

- His academics are average
- He is not interested in school, and forgets assignments, etc., yet has a good sense of responsibility which keeps him conscientious at least for the minimum effort he can skate by with.
- During the assessment, his IQ was measured at 86: low compared with the family baseline, and it does seem harder for him to absorb academic stuff than for me and my other kid (after allowing as best I can for ADHD, Asperger’s, etc.).

- His social experience seems typical for those with Asperger's.

- He follows the rules, and has never been in trouble, yet tends to be a target for bullies.

- He is generally easy going and happy.

- He is an awesome kid! I go on all day about why, but unfortunately, his teachers and other adults seem to range from cordial, but indifferent as to anything that makes him a great kid, to downright unimpressed, although they don’t consider him a discipline "problem."

I incidentally, have also been diagnosed with ADHD, and the psychologist who diagnosed my son seemed to think that I also have AS. I have not been diagnosed, but the online tests I have taken seem to agree with the psychologist, these new hypotheses explain SO MUCH, and the model fits SO WELL to explain me, my relationship with other people and their reactions to me, my work, experiences, successes and failures. These are questions that have plagued me my entire life, which have been completely inscrutable to me before this new model.

One more thing: I am staunchly of the opinion that there is nothing "wrong" or "broken" about either me or my son, and that there is nothing that needs to be "fixed."

All this being said, I know that I have had a rough time of a lot of things in my life. I think (although it’s so subjective, I’m not sure) that my son fits in a little less well than I do. Without being able to compensate for some things by virtue of being as academically capable as I was, I don’t see how I could have maintained the relatively comfortable, middle class existence that my family and I enjoy. I was 43 (and my wife 40) when our son was born, so if he lives the same lifespan as us, he’ll have 40 years of adulthood without a parental safety net. So with ADHD, autism, and the kind of reception in life I’ve seen this leads to, PLUS a lack of interest in things he can market to support himself, AND only low-average academic/intelligence benchmarks, I’m really worried about how he can have a successful enough career to be comfortable. I also want him to be happy, and not be depressingly isolated throughout life.

Do you have any ideas about what can be done to promote the best, most fulfilling life possible for my son?

Teach him independent living skills.

What comes to mind: Encouraging the development of interests into directions of activity, skills, connections, and opportunities to interact. At times, interests can grow into a purpose and motivation to drive activity and produce opportunities to acquire skills and interact with others.
For instance, my own interest in history lead my to seek a career as a historian, helped lead to further interests in philosophy and politics, helped foster the development of general skills related to analysis, research, and writing, it lead me to attend university, where involvement in the history club helped me to develop my social skills and ability to work with groups, and has no set me to seeking to develop further independent living skills in preparation for grad school.
Now not all branches of developing interests lead to the same result or have the same potency for effect, but in general it has the potential to do help in some matters.
ANother example that comes to mind, is that of two of my cousins (who are two brothers, the older having adhd and younger autism). Their drive to be able to purchace things they want has lead them to engage in all sorts of ventures to earn money through selling things or completing odd jobs.
Though in any case, the development of interests into useful directions often involves the help of useful guidance to aid in showing how such interests relate to other things, what can be done with them, and what things are needed in order to accomplish certain things.

It's a tough line with kids of any kind: finding a way to teach them what they need to know without trying to "fix" or "improve" them, right?

Your son is clearly in good hands. If he is diagnosed with autism, he qualifies for an IEP - it is one of the specific classes of disability where a child can get one. A 504 is for accommodations (like getting braille for blind kids, or having hard-of-hearing kids sit at the front of the room) and typically does not have enough support in it for your son to get what he needs.

An IEP is an Individualized Education Plan. Basically, anything your son needs to learn that is outside of the typical kid's school experience goes into an IEP, and his progress is charted in a system not unlike grading. Kids on the spectrum often have a bunch of things they need broken down in a cognitive way that other kids learn instinctually: pragmatic (social) speech (that's a big one and schools miss it all the time,) social skills, executive functioning (organizational skills) and sometimes learning to label and manage their feelings, or their senses. Schools will try to tell you that they can deliver these services via a 504 - don't buy that. Your caseworker may have the best of intentions, but a 504 has no system to ensure your child is progressing - and if down the road your caseworker goes away, you might be stuck. In a worst case, schools use a 504 because they hope you will accept less than your child needs and they can save the money of educating him - even though that is against the law.

Of course, I don't know your kid, and every situation is individual - but I wish someone had explained this to me when we were offered a 504 back in the day. We took it - my son got "lunch bunch" occasionally (a social group with no curriculum) and was allowed extra time on tests that he didn't need (schools bend over backwards for accommodations that might impact them) and a "free pass" to leave the room whenever he was overwhelmed.

Unfortunately, none of this actually helped my son learn to communicate and understand people, and since he had a near college-level vocabulary by 2nd grade, he spent the next few years panicked, confused...and bullied.

We have since sorted it out - he's in high school now, and although the high school isn't the greatest, we had a fantastic middle school experience that is carrying over to some degree; he learned a LOT of skills in middle school because they were liberal with the services. He's going to be OK, but I wish we could have helped him sooner.

My son has Aspergers. He was diagnosed at about 4 yrs old, and we were fortunate that the school system in our town offered a lot of support. We also signed him up for programs outside of school, in particular, social skills training, which was very helpful. Teaches the basics of how to converse with people, how to approach someone to be friends, etc. Things that come naturally to most people that he had to learn. If you think your son has problems in that area, that would be very helpful.
He had in his IEP that he had to "check in" with an assigned teacher every day before he left school to make sure he was bringing home what he needed to get his homework done. (His sister who has ADD had this also). This helped with the disorganization part.
So my advice is, take advantage of anything your school offers that will be helpful, but don't depend only on the school. Show interest in the interests he does have. And he already has the most important thing, which is parents who think he is awesome.

Thanks for the responses!

@Ettina, I think he’ll be doing pretty good with independent living skills. We’re teaching him age appropriate stuff and he does OK with it.

@Yelekam, his only real interest so far is video games. I can see how that can branch into things that become marketable. I don’t know whether it will or not, but it was the basis of his science fair project last year. He’re hoping he’ll stay interested branching it further.

@momsparky, thanks for the stuff on the IEP. That’s good reason to be a more proactive about the IEP vs. the 504 than I otherwise would have been.

@dor, the psychologist who diagnosed him said there was a group that provides a social setting that sounds a little like your son’s outside program. We haven’t checked it out yet, but it is on our list.

I'd recommend doing some research on special education - there's a sticky at the top of this board. A couple of things to know: don't do anything verbally - or if you have a conversation, follow up with an email or note in writing containing the content of the conversation "to confirm." Your school may well be fantastic, but documentation is important in this situation.

Second, the school is going to want an evaluation of their own - it's just the procedure. Make sure (even if your child is highly verbal) that they also evaluate his speech - pragmatic (social) speech is a therapy they can offer. Ask for it writing stating your specific concern (autism, pragmatic speech) - your state board of education's website should have form letters that you can copy.

Good luck!

I found the stuff about IEPs at http://www.wrightslaw.com/ helpful. I find the process a bit overwhelming, so having my own process for keeping notes and making sure that issues are properly addressed is very helpful.

A pitfall is when they put something vague in the IEP and then talk specifics with you. The specifics actually need to be in writing. Some Child Study Team people can make you feel that it's somehow rude to ask for that, but it actually helps everyone later on, so it is worth the effort to get it written in to the IEP.

The other thing I discovered was that there seem to be more resources for executive functioning skills for people with ADHD. For some reason this seems under-addressed in material for people with ASDs. Workarounds, scaffolding and supports for executive functioning problems (like scheduling and organization) are one of the best ways to support independent living skills.

I agree with most of what's been said already. And if it hadn't been said, I would probably say it as well. But since there is no reason to go over that again, lets take a look at the language you are using here. OK? Because, trust me, your boy is internalizing every word.

First off, the kid is 13. And you are worried about his lack of interest in marketable skills. Where do we even go from here? Yes, you can find the occasional 13 year old who is bent on becoming a doctor or a computer game engineer. But in general, 13 year olds are interested in terrible music, basketball or skateboarding, the latest manga, and farts. They are not thinking about their stock portfolio.

Secondly, you seem to be equating "happy" with being a white-collar, upper-middle class professional. Working class people can, and are often, very happy with their lives. In fact, on average, a person with a stable working class job and a small but cozy apartment with his wife and pet iguana is happier than the stressed out executive with the too-big mortgage and the resentful wife and three entitled kids, all of whom feel constant pressure to succeed, succeed, succeed at all costs.

By far, the best indicator of which 13 year olds are going to have a happy life is how they deal with other people. Do they have compassion? Do they approach people who are weaker or younger than they with kindness? Do they work diligently, even if they don't excel? Do they like their teachers? Do they know how to deal with their emotions? These can all be harder for autistic kids, but if you want your teen to become a happy adult, these are the skills you will emphasize. Academics, while important, don't come close in importance to these skills.

There's an excellent chance that your kid is going to get on an IEP and with the support he needs, his grades will improve. Statistically speaking, he's very likely to follow in your footsteps, career wise. But before that happens, think about the messages you are sending him. Think about what that's going to do to him if you equate "happy" with "succeeds at being a professional." Because trust me, he hears you. And he doesn't want to disappoint you. And that's the kind of thing that lands austistics in therapy for years as adults. We end up with this crushing sense of never being good enough. And this is where it starts, with the understanding that just by being himself, he is letting you down.

Just for a little context - this comment is coming from my point of view of being both a former special education teacher and a current autistic. I used to teach middle schoolers with autism.

I think a little clarification is in order.


If only he was interested in terrible music, basketball or skateboarding, the latest manga, and farts. (Well, OK, he is interested in farts. ) Then there would be something to work with. If I said we were going to Disney World tomorrow, this kid would complain and want to stay home. Mind you, he would enjoy it once we got him out. Now I'll probably get choruses of "get him out for stuff!", and I get that, and we do (don't worry, we don't force him into a bunch of activities he hates all the time either), but that doesn't change the fact that video games is pretty much his one and only interest and he needs to be prodded into anything else.


Then I have either not communicated well, you misinterpreted, or some combination of both. I firmly believe that abject poverty can make you unhappy, but once you have your basic needs met: food in your belly, some sort of roof over your head, etc., that money does not buy happiness, as they say. When I said, "I’m really worried about how he can have a successful enough career to be comfortable. I also want him to be happy, and not be depressingly isolated throughout life." perhaps it was unfortunate that I juxtaposed my three concerns after extensively expanding on the first but not on the second and third. I think there is some risk, if a worst case scenario were to play out, of him ending up homeless, and I can't pretend that that's likely to contribute to a "good" life (whatever that may be).


There is a "different wiring" aspect that comes in here. My son, for example is very compassionate and absolutely approaches those who are weaker and younger with kindness, but he completely lacks the same flavor of empathy that NTs seem to have. Since he was young, I interpreted one of his qualities as having his own agenda and being resistant to being unduly influenced to embrace other people's agendas (both crappy and wholesome agendas). I always considered this such a good quality, but perhaps it's not generally regarded that way so much on planet Earth. So he still has to deal with all the grief autistic people classically have to deal with for not "getting" all the expectations that most people seem to instinctively grasp. All of the above you mention are elements of both his happiness and his reception from other people, but it's still going to be hard to fit in. So it's complex. The only thing I know to do, is to foster the good personal and interpersonal skills as best I can.


This is a little bit creepy, because although I feel like I wasn't fully understood with all the things I tried to say, if you replace "being a professional" with "being smart," this dynamic is sort of present, but in a fashion that I don't see any way of being obvious from what I have posted so far.

You see, part of what I ever understood about myself was that I could always come up with tons of reasons that I was brilliant right along side of tons of reasons that I was stupid. This is something I think I understand a lot better now with new information I have absorbed over the past few months and years. Although academics were not encouraged for me, my self-expectations were grandiose. When I was thirty-ish and went back to finish my degree after flunking out the first time, my mother did everything in her power to dissuade me. Fast forward to my other kid, the older one. She was diagnosed with ADD and has a lot of stuff going on, but being on the autistic spectrum is not one of them. In terms of IQ tests, she is at least as far above the mean as my son is below. Starting in middle school, her grades plummeted. I'm not talking about not meeting any trumped up expectations of mine, I'm talking about failing and having to repeat classes. I think she will still go on to graduate high school, but I'm not even 100% sure of that. When I look at everything I (and my wife, for that matter) did, I think I did OK, and not what could be accused of being too extreme in either direction by most anybody. Yet I cannot help but worry about the possibility that I somehow sent out warped messages because of my own personal demons that I had to wrestle with.

I made somewhat of an adjustment with my son. The dynamic I had been more worried about was somehow signaling that I had lower expectations for him. So there may be a thing about subconscious messages I am sending. I know one thing: I've been pondering the tar out of this sort of stuff since last night.

Hmm... that's an interesting thought. I guess you could go too much the other way. Always letting them off the hook is kind of a way of letting them know you don't think they can go very far. And that's a very painful message, too. I see your delema. Where's the balance?

Its interesting that he's the son of older parents. My parents, like a lot of people, where so young and immature when they were raising me. They didn't have the self-understanding to even ask these questions of themselves.

You say that you're OK with the diagnostic process. But then you bring up homelessness. The anxiety is still showing through. Let me tell, you, I've worked with kids who are at risk for being destitute and homeless. The difference between conversations I've had with their parent's, and the conversation we're having here is HUGE. I'm talking gun fights and "we caught our 5 year old stealing Daddy's meth." Homelessness is a million miles away from where your son is now. Could it happen? Well, I suppose a lot of things could happen. But that's anxiety. Unless you aren't telling us something really big here, its a pretty out-there scenario. We catagory 1 autistics tend to find our way.

That good heart that you describe in your son - that's what you have to protect. That's what's going to have him find his way. You're describing a pretty common set of traits in autistics. There are some super unconscious autistic kids out there, but there's also a pretty common sub-type where we're really pretty open hearted and metaphorically "squishy." Its such a great characteristic to have, but society will do everything it can to crush it out of you. Some people see it as a weakness. HA! They have no idea that they are the one's who are week. But that understanding is a long way off from a 13 year old's mentality. I didn't start loving my squishiness until I was in my mid 30's.

We have this way of finding our way in life. I'm not homeless. I do live in one room in the back of my clinic (which I OWN, btw. Very proud of that as it happened after many mis-trials) My life is not what my parents would have set up for me, but its a good life. Living with a disability, yah, I've thought about what it might be like when my parents die. They are my safety net. Its one of the reasons I started re-creating a paper trail around my disability status. Just in case things get worse and I need to use SSDI someday.

So that's one thing you can do for him. Keep a copy of that paper trail hidden away. Include some evidence that he had symptoms starting in young childhood. Maybe even put a note in it that tells him this might be useful someday as he starts to get elderly. Don't give it to him! I was given mine in my early 20's and I burned it because I felt like it was binding me to a painful past. Oh. the arrogance! I didn't understand that I would get older and needier some day.

There are some ways you can use video games to get him out into the world. There are computer camps in the summer. (And sometimes on winter break.) And there is tech club in school. There are cons to attend. Video games are a common obsession these days. If you can feed that obsession in a way that gets him out into the world, you might someday find its more "marketable" than you ever thought. My cousin works for Disney, writing code for their toddler video games. In addition to making an awesome salary, he gets free passes to go in any time he and his boys want. They are all quirky and squishy as hell, but they live in a world where that's just expected. So I wonder if the boys are even aware that much of the world doesn't appreciate their uniqueness. I don't think they really care all that much. Free passes to Disney. Life is good.

I've seen some really good suggestions on here and I just wanted to add my two cents. One of the kindest and most loving things you can do for your child is to teach him skills that will allow him to be independent. These may be things that you take for granted and don't even realize are skills.

For example, I went off to college at the age of 17 and my parents had never taught me how and when to wash my clothes. I ended up getting a skin rash and ruining some of my clothes in the dorm machines.

Teach your child how to cook, how and when to clean, how to do dishes, how to make simple repairs to household items, how to sew a button back onto a shirt, how to shave and wash himself. Teach your child about personal finance and how delaying gratification leads to greater happiness. Teach your child how to say no to people. Teach him the difference between a friend and a troll.

These were all the lessons I wish I had been taught as a child and young adult, because it would have made my transition to adulthood a lot easier for me.