[Question] How to handle new diagnosis for son

[ncts_dodge_man]

So my almost 7 year old has been recently diagnosed as being a mild to moderate level Austism Spectrum Disorder.

I know routines are huge (we're working on them) and such, but has anyone else here dealt with this type of situation?

The doctors think that with some additional work he'll be highly functional, but it'll be there for the rest of his life.

I'm just kind of at a loss at the moment - there's so much that we're going to have to do and am a bit overwhelmed.

 

[Tinwhistler]

My son was diagnosed with autism last year, though we suspected it long before the official word. It is overwhelming at times.

My son does well with routines (specific times for eating, playing on the computer, bed time, etc), as well as with specific rule sets on the things he can and can't eat, his list of chores/priorities. We have a chart on the wall where we can track all of the things he's responsible for (brushing teeth, making bed, doing homework, that kind of thing), and if he does enough of them successfully, he earns some extra fun stuff (going out for yogurt, extra computer time, etc).

I feel kind of like a weird strict disciplinarian when I think about how regimented much of his life has become, but I've come to realize that he really thrives with the sense of routine and structure. I still have worries about him eventually going out on his own (he'll be 15 this year), but I have hopes that one day he'll be able to go out and make his own life for himself.

I think @Dei could also help with her own experiences.

 

[Bubble181]

It really depends on a whole lot of factors. "mild to moderate ASD" ranges from people like me (I'm an active member of society, thankyouverymuch), some of the (self-proclaimed) Aspies who populate so many websites, to some of the people my girlfriend works with - who live in assisted housing, need outside help for basics like shopping, can't work in a "regular" job but need to be placed in "asisted" work houses,...
It's a very, very broad diagnosis, with some overlap but still a lot of wiggle room. If he's 7 years old now, that's, in some ways, a good thing - some of the worst excesses can be seriously mitigated or avoided with early detection and good follow up.
VERY IMPORTANT: DO NOT TRUST EVERY RECOMMENDATION YOU GET. There are a LOT of bottom feeders out there capitalising on people's fears surrounding autism. There are also a lot of good-intentioned nutjobs out there. You'll hear about "solutions", "cures", and "causes". Whether it be paying/praying to the right church (I'm not saying Divine Intervention can't work, but it's kind of a longshot and probably not worth spending all your money on ).

Remember, always, that someone with autism is NOT inherently smarter (as some - especially abovementioned Aspies would have you believe) or dumber (as they are sometimes branded since they can have serious issues with seemingly "simple" tasks, commands or agreements) than a "normal" person. They just work slightly different. Also try to remember that autism isn't necessarily something you should try to "cure". Depending on the level he can operate at, he may get (incredibly) frustrated because of it at times, because it's hard to fit into a world that seems to operate by rules you just don't see or understand. He may lash out and show hostility/anger. Scrap that -he will show hostility and anger. Try to understand that this is mostly anger at himself, and at the world for failing to make sense, for things being hard, at his own failure to "cope" or to work the same way others do.

Lastly (ok, I could write a novel full of self-help crap about this but who wants to read that?), accept that you're only human, yourself, too. His problems will lead to problems for you. His anger will make you angry. You will get tired of this shit and wonder why you're blessed/cursed with such a child. That's ok. Taking it out on him isn't, obviously, but you're not a bad person or a heathen or a sinner or whatever else you might think of yourself for thinking about giving up or wishing he wasn't there or anything like that (more than likely you'll be thinking the exact opposite often as well, especially if it's a more pronounced form of autism - while not as much as Down children, children with heavier autism can be awesome at making you happy and showing you love). Sometimes you'll need help. Sometimes people around you won't understand.
While experience teaches support groups aren't always great for the person with autism himself (because different people's issues can go counter to one another - if one insists a door is opened 4 times before passing through and another insists you can't open a door without someone entering or leaving, hilarity ensues...or not.), they can be a great help for parents/guardians/close relatives.

 

[Dei]

I am out right now, I'll add something when I'm not using my phone.

 

[Bowielee]

It really depends on a whole lot of factors. "mild to moderate ASD" ranges from people like me (I'm an active member of society, thankyouverymuch), some of the (self-proclaimed) Aspies who populate so many websites, to some of the people my girlfriend works with - who live in assisted housing, need outside help for basics like shopping, can't work in a "regular" job but need to be placed in "asisted" work houses,...
It's a very, very broad diagnosis, with some overlap but still a lot of wiggle room. If he's 7 years old now, that's, in some ways, a good thing - some of the worst excesses can be seriously mitigated or avoided with early detection and good follow up.

It's even broader now with the DSM V.

 

[strawman]

I wish I could help, but the two I have on the scale are fairly benign. We have to work with the schools (iep, 509, in michigan) and the older one (teen, asperger) has a few minor allowances, such as being able to do all homework on the computer in printout form (some teachers want handwriting, but that just isn't going to work for him). The other one is PDD-NOS, which, for him, just meant he was too young at the time of diagnosis to determine where on the scale he actually was. Last year he had a few things (rubber bands on his chair legs to bounce on, teacher working with him a little differently when handing out class work, etc). This year he seems to be managing. Both had an hour or two a week last year meeting with school aides to work on patterns and strategies for dealing with life. The older primarily on social situations and cues (facial expressions, etc), the younger on managing distractions, whether internal or external.

Some of this will apply to you, but every person is different. It is a lot to understand and take in all at once, but you can handle this. The overwhelming portion will ultimately pass away as you gain understanding and appreciation for the way they view life. If you don't have any autistic tendencies yourself, you might find books like "the curious incident of the dog in the night time" by Haddon enlightening. But you'll be swimming in enough literature anyway.

At any rate, the diagnosis hasn't changed him, and you don't want to change anything overnight anyway. So learn a little, explore a few techniques and different ways of relating to him, then learn a little more. You will be fine, he will be fine, and while there will be rough patches, there will also be moments of incomparable joy - just like there are with children that have different experiences and challenges in life.

 

[Dei]

OMG the handwriting thing. My son went from partially proficient on Writing standardized tests to Advanced as soon as he was allowed to type that shit (middle school) because hand writing is so ridiculously hard for him that he has to be forced to do it. I have been searching for a good type of program to let him do his math homework without having to write it, to no great avail, so we still struggle to get it done.

My son has a few huge challenges. When it comes to school he is generally fine, he has the issues with handwriting, as Stienman's does, but he WILL NOT do homework. To him, school is school, and home is home, and never should the twain meet. We had to take an elective away from him to give him a class period in which to do homework, as it was the ONLY way it was ever going to get done. He is very smart, he has a very analytical mind, and wants to know how everything works, but he will only really do things on his own terms. He has other issues with fine motor besides hand writing, he won't tie shoes, so I replace all laces with elastic Lock Laces. Within the last year he has started to bite himself when he hits obstacles, doesn't get his way, or is basically asked to do anything that isn't what he was going to do. I haven't really figured out what to do about it, since he will do it basically as a reflex at this point, whether he is actually upset or not.

Honestly, I have no good times except take it a day at a time, and if you are feeling overwhelmed, make sure you take care of yourself. I had a ridiculous breakdown during the whole "Won't do schoolwork outside of school" fiasco at the end of his 6th grade year and I had to call an emergency meeting with his special ed team to calm myself down. A good special ed team will be there for you as much as your kid. Make sure that you are very proactive and on top of his special ed team as well. If you feel like your child's needs aren't being met, call a meeting, be annoying (you aren't being annoying, even if you feel like you are).

 

[PatrThom]

To him, school is school, and home is home, and never should the twain meet.

I'm not on the spectrum (that I know of), but even *I* think that assigning homework is a minor sin. Then again, I'm smart enough that I usually didn't need the rote of homework to pound a lesson home, so I never really saw its worth.

--Patrick

 

[Dei]

I'm not on the spectrum (that I know of), but even *I* think that assigning homework is a minor sin. Then again, I'm smart enough that I usually didn't need the rote of homework to pound a lesson home, so I never really saw its worth.

--Patrick

He already has reduced homework, which is basically useless for him as well, but the difference between a typical child who doesn't want to do something and a child with autism who doesn't want to do something is many many many degrees of stubbornness/unwillingness.

 

[strawman]

Oh man, shoe laces. I forgot about that. The older one wears slip ons, and will only tie shoes under duress. The younger one is ok with tying shoes. The older's form of self soothing/refocusing is playing with two small Lego pieces he carries with him everywhere. Not specific pieces, almost any two will do, as long as he can snap and unsnap them repeatedly, unconsciously. The younger one just uses his hands in a little pattern right in front of his face.

I don't even think about it anymore, but I suppose it must look odd to others.

Homework is a huge issue for he older one. He can spend hours sitting in front of the computer doing one small assignment, and he's not playing games.

 

[AshburnerX]

OMG the handwriting thing. My son went from partially proficient on Writing standardized tests to Advanced as soon as he was allowed to type that shit (middle school) because hand writing is so ridiculously hard for him that he has to be forced to do it. I have been searching for a good type of program to let him do his math homework without having to write it, to no great avail, so we still struggle to get it done.

I'll second the hand writing bit. I'm considered right on the borderline for autism (probably would have been labeled autistic but for the 144 IQ at age 7) and simply having access to a computer for typing brought my writing grades significantly. It's the number one thing you'll want to fight for when you need to worry about his IEP. And yes, the math issue is one I have too... in college it's not a problem except when taking tests because all colleges use software like ALEKS (which has K-12 programs as well as college level ones) for all the homework but I don't know how you'd adapt that for your son. Something to look into maybe? Regardless... teaching your child to use a computer and how to work/communicate with it will make their lives unmeasurably better.

My son has a few huge challenges. When it comes to school he is generally fine, he has the issues with handwriting, as Stienman's does, but he WILL NOT do homework. To him, school is school, and home is home, and never should the twain meet. We had to take an elective away from him to give him a class period in which to do homework, as it was the ONLY way it was ever going to get done. He is very smart, he has a very analytical mind, and wants to know how everything works, but he will only really do things on his own terms. He has other issues with fine motor besides hand writing, he won't tie shoes, so I replace all laces with elastic Lock Laces. Within the last year he has started to bite himself when he hits obstacles, doesn't get his way, or is basically asked to do anything that isn't what he was going to do. I haven't really figured out what to do about it, since he will do it basically as a reflex at this point, whether he is actually upset or not.

I had this homework issue too... the stress of simply pretending to be like everyone else all day was enormous for me and I just wouldn't do my homework if I couldn't get it done at school. I just didn't have the energy to put up with the hassle of it. Eventually I got a period for "tutoring" but like your son, it was basically a supervised study hall but with an aid there to help me with any issues. This was entirely enough to get me to do it. One thing I will mention: I chew on everything too. LEGO bricks, pencils, pens, ice cubes... basically anything I could get in my mouth, I would chew on to help me focus and calm down. I still do this to a degree, but it was a near constant thing as a kid and it's the reason my teeth are completed messed up right now. It's mostly a stress thing... I even did the thing where I'd bite my hand until I had deep impressions for awhile. It's entirely cathartic, but dental work is expensive sooo...

I think the number one things that any parent needs to always keep in mind when dealing with an autistic child (especially mild to moderate ones) is that they know something is different with them and they hate every moment of every day they have to deal with people. It's the most frustrating, boring, and just plain upsetting thing of our lives. This doesn't mean we don't love the people in our lives or that we don't understand that society has rules we need to follow, but our inability to simply ... function in social situations basically makes us surly and angry all the time. This will make their teenage years absolute hell for both of you. There will be times you want to strangle each other. Ultimately though, it's up to your child to learn how to live in a world that seems completely alien to how things should actually be... and you will never be able to help them with that, except to be there if they need you.

 

[Zappit]

Let's look at one of the most important facts here.

Your son is still the same little boy you knew the day before his diagnosis.

The other big thing is that you are your son's biggest advocate. There's going to be a lot of advice - doctors, teachers, special services, and it's up to you to decide what recommendations are best for your child. Nobody's going to know your child better than you.

There are also many services out there, and you will need to do your research to find what you can utilize. This can be anything from programs, (educational, social) to money. My brother was diagnosed just when people were starting to recognize and provide services for those with autism, and there was a fledgling services agency that provided financial assistance to families with autistic children. It helped quite a bit.

The other thing is that you'll need to be consistent at home. Routines are important. Heck, my parents wrote the house rules on poster paper and taped them on the wall. It helped create a stable home environment, and allowed then to teach my brother how we can sometimes bend the rules or be a bit more spontaneous. They had to figure out a lot of things along the way, and there wasn't much literature available.

But that's the thing - you will figure it out. You will see what you need to do, and you'll do it. If it doesn't work, you'll try something else. But you will figure it out, and you and your family will be happy and fine.

 

[Dei]

Here's something else important. Do not let other people's opinions dictate how you feel about your parenting when it comes to your child. I almost punched my mom in the face this morning when she suggested that I should take parenting classes to learn how to make my son do his homework. I invite her to live through his year and a half of sixth/seventh grade homework without having a mental meltdown before criticizing that fact that he must have a study hall for homework because he won't do it at home.