Fighting for my 5 year old

[Mamabear71280]

My son has not been diagnosed, but my husband and i are living under the assumption that our sweet boy likely has high functioning autism. He has been to OT & continues with speech therapy. There are a lot of characteristics of his behavior/personality that I don't even relate to autism...its just him. However my husband points them out, and I worry for my son all over again.

I'm speaking to the adults living with autism, how best do i accept and support my son. The future is terrifying for me as a mother when I think of things that he may struggle with (anxiety, lack of acceptance, possibly lack of relationships outside our family).

I often feel like dr/educators are telling me all the things wrong with him and how best to fix him. I hate that. He's the smartest and funniest kid I know, and so extraordinarily loving. He, even at a mere 5yo, is already one of the best people I know. I want him to thrive and have all the skills/techniques to be happy.

I simply wonder, now that you're adults, if there's something you wish your parents would have done differently to support you.

 

[AloneNotLonely]

Keep him out of school is the first that comes to mind.

Other than that you need to continue to teach him correct social skills if you want him to be accepted as an adult. Eye contact, no stimming in public, a lot of physical contact (basicly be a Mamabear) and also explaining through logic whenever he does something socially unacceptable. Things which are common sense to normal people might seem illogical or crazy to him, but you can still teach him these things.

Anxiety comes from light, sound, large social groups and unannounced parties/trips/etc. Live in a quiet area to avoid anxiety from sound and light and make sure you prepare him for any upcoming events (even silly things like going to a restaurant or a movie) by telling him well in advance and continuing to remind him. Limit large social groups and always tell him in advance about them, he should still experience them once in a while so he can deal with them as an adult but don't do it too often as there is such a thing as too much.

Obviously, if certain things don't appear to a problem for him then you can focus on them less. But I have found that it's possible to regress.

I have no issue with large social groups, but sound is a major problem for me. I have my own private freak out whenever I need to take a trip (usually results in no sleeping) but I still don't avoid going to places I want to visit. The more trips I take the easier it becomes and the whole freak out is just a part of the routine. I've never had any real problem socializing, but I had a period in my 20's where I had trouble meeting people because I spent quite a few years gaming day and night. Forcing myself to socialize fixed that rather quickly. All in all I'm doing pretty well, but I would've done better much sooner if I wasn't sent to school and drugged by psychiatrists.

 

[Streetwise]

I wish somebody had taught me how to cope when my mother was dead! it was catastrophic !if I'd learned !how to gradually !leave her !how to make decisions ! specifically about utility bills,insurance ,tax and not panic or become anxious.
how much to tell people ,if I started learning this as a child my life would be bearable now !it takes me years to learn anything !.
this is for anyone who suffers from panic attacks or panic disorder ,let !yourself !panic !it doesn't !do !any !good !to try and control! it !if you suffer from panic disorder shake your leg it will rid you of the excess energy much easier if you are lying down make sure you eat (it appears to be a sign to the primal brain ,otherwise known as panic ,that you are not being attacked )and if you get irritable bowel syndrome and you are not in the diarrhoea phase move about after you've eaten !(there are two phases of irritable bowel syndrome diarrhoea and constipation)again it will expel the gas ,which is dangerous , common or garden indigestion tablets will also help,avoid mint if you are suffering from irritable bowel syndrome!.
I wish somebody had told me as a child what a panic attack was exactly !

 

[Pats]

He's 5, start with simple things, like helping him find a way to control his actions. Teach him it's good for him to be him and that he's loved for it. As he grows into better understanding, let him know why people do what they do. Let him be him but also teach what is and is not acceptable.

 

[clg114]

I really do wish that the medical professional people knew as much when I was a kid as they do now. Things would have been a lot different. Back then if autism was mentioned, people thought of very low functioning autism.

As for your 5yr old. I am a firm believer that kids that age, who show signs of autism, should be getting professional counseling. This will help them to better deal with their weakness's and, more importantly, help them to take better advantage of their considerable strengths. It would be nice to have a diagnosis, but not needed to get the proper counseling. Look at it this way, with the right help and education, you may have son that could change the world in a very important way.

 

[clg114]

Oh ! I almost forgot. Welcome to AutismForums!

 

[Mr Allen]

Don't send him to school, as bad as it sounds if he acts in any way "different" he WILL get bullied, I know this from painful personal experience.

 

[Fino]

I wish my parents didn't dismiss or get angry in response to every complaint I had, so just don't do that! I needed glasses but didn't get them until I started driving because all previous complaints were "ridiculous" but then it wasn't legal for me to drive!

So I guess the less specific advice would be: listen!

But you sound amazing so that's probably already happening.

 

[the_tortoise]

Other than that you need to continue to teach him correct social skills if you want him to be accepted as an adult. Eye contact, no stimming in public, a lot of physical contact (basicly be a Mamabear) and also explaining through logic whenever he does something socially unacceptable.

Please don't try to stop him from stimming unless he's hurting himself or others. Being regulated and functional is more important than being normal -- some autistic people literally need to stim to be regulated and to manage in the world.

By all means explain to him, when he's at a point of development where he can understand such things, how other people might view his stimming and give him suggestions for how to make his sort of covert if it becomes a problem for him socially and he'd like to keep it on the down low, but please don't tell him that he shouldn't stim in public or try to stop him from stimming in public. And be careful to make sure he knows there is nothing wrong with stimming -- don't make it out as a bad thing because it's not; It's merely something different, and people are not always comfortable with with difference but that doesn't mean the difference is bad or should be hidden.

I stim a lot (I rock and have a hand stim) and I've been accepted in vocational, academic and personal settings, regardless. (In fact, the first time I was made aware of the fact that I rock a lot was in a staff meeting. It has been a non-issue for me. I am probably a lucky exception to the rule, since many are made fun of or ostracized for such things....but I'm sharing this to illustrate that it's possible to succeed and be okay even if you are visibly weird.)

Same thing for eye contact -- eye contact can be painful/extremely distressing for some autistic people. It can also (for people like me) prevent an autistic person from actually being able to listen and process what people are saying if they get distracted by making eye contact or trying to process all the visual information from someone's face/body language at the same time as processing all the auditory information in someone's voice plus the words they are saying. So again, teaching hm that people expect eye contact and encouraging him to make eye contact to the extent he's able without any harm is great, but I don't think you should force it or make a huge fuss over it.

Teaching him the social value of handshakes and how to be polite about not wanting to be touched is good, forcing him to be physically affectionate is not.

Other things that adults did that helped me:

Work with him on empathy and perspective taking from his point of view -- compare his experiences to those of other people to help him understand how they might be feeling.

Teach him social scripts for things like introducing yourself, asking if you can join in a game with other kids, and starting a conversation. Make them very concrete and specific (give him exact words he can say, and describe when to say them using concrete examples).

Encourage him to pursue any intense interests.

Give him lots of advance warning of changes, if he has trouble with change.

Accomodate his sensory needs whenever possible.

Make sure he knows he is loved and accepted just the way he is. Parents and home should provide safety and respite from the difficulties he will encounter in the wider world.

Things that would have been useful to me:

Don't shame him for having meltdowns, be compassionate and pragmatic instead. Help him to figure out why he has them, what overloads him/what the triggers are and to pay attention to his internal state. Help him to figure out what calms him down and to practice calming strategies in stressful situations. Once a person has begun having a meltdown they can't just stop -- it's not a chosen behavior -- so the best way to address meltdowns is through prevention.

 

[AloneNotLonely]

Geez, I'm not saying to put a gun to his head and force him to make eye contact while goosestepping.

I'm saying that too much comfort is not a good thing. You need to be slowly pushing the boundaries of what he's capable of so that by the time he gets to high school he won't be "The retard". No matter how much you scream that it's everyone else and not you, it's better to be able to fit in so you don't draw unnecessary attention.

I was raised in this way because the whole Autism thing wasn't known in my early childhood so any deviation from normal was considered "Weird" and something that was acceptable at home but not in public. I turned out pretty well, I don't stim and eye contact is actually pleasant for me although I'm easily distracted so I do need to apply a little focus so I don't start staring at random things while talking to someone (which is frigging rude).

You can raise an Autistic kid in a bubble but eventually the real world comes knocking and at that point he won't be prepared and will have rely on the grace of strangers to excuse his strange and rude behaviour.

 

[the_tortoise]

You can raise an Autistic kid in a bubble but eventually the real world comes knocking and at that point he won't be prepared and will have rely on the grace of strangers to excuse his strange and rude behaviour.

I never suggested raising an autistic child in a bubble or letting them get away with behavior that is rude.

"Rude" and "strange" are not synonyms....being strange is not some kind of sin against others that you need to have excused.

 

[Mamabear71280]

Thank you to everyone that has taken time to respond. One thing I noticed was the idea of keeping him out of school; he's already in kindergarten. I did consider waiting year since he's a young 5. However, he's very bright and not disruptive, they've made no mention of him stimming. (At home, we notice that he runs around and kind of flails his arms when he gets bored. We do try to correct this because he doesn't need to run in the house & he might knock things over). He doesn't rock or refuse to make eye contact.. unless I'm telling him something he doesn't want to hear (like stop running with the puppy, or it's your sister's turn) He loves his kindergarten teacher, he has asked to take her to skyzone , we've had to talk about only kissing mommy and sister ‍. His teacher and school interventionalists have mentioned that he does better with one on one directions (he has a difficult time staying on task if he's not interested; if he's engaged, he's awesome.) and while the kids enjoy him, he prefers to be by himself or with adults. I often feel like he doesn't have the confidence or conversation skills, so he chooses not to interact. From my knowledge, the school is working with him to interact more. At home he interacts with his sister (3yo girl) pretty well. He will cover his ears when he knows something big, loud, or bad is coming..like right before a timer goes off or before Ironman crashes in a film. He will also walk out of the room when an emotional scene comes on, and we do our best to explain to him. He's not throwing fits or tantrums during those moments.
My biggest concern is conversation. I feel like I'm constantly repeating myself, unless like the ST told me to, I explain to "do this 1st, this next..last ect". He uses the wrong diction because the right word won't come to mind ( we tell him that j/k that Michigan is disgusting since my husband is an OSU fan, but he'll say that the Irish (my fave) are yummy. He often talks to himself when we are eating dinner (about cartoon characters mostly) but when we ask him about it he says "I'm just saying nothing"
I am both worried & proud of him, but I'm always wondering what more I can do...especially in a school setting that I'm not physically part of..I am a mama bear after all.
Thanks

 

[the_tortoise]

He often talks to himself when we are eating dinner (about cartoon characters mostly) but when we ask him about it he says "I'm just saying nothing"

Perhaps he is practicing (practicing talking/conversation)?

Or has a secret imaginary friend?

Or just really, really, really likes to talk about cartoon characters so much that it doesn't matter if anyone is listening?

 

[AloneNotLonely]

Sounds like you have nothing to worry about. Keep up what you've been doing.

Don't worry about weird behaviour at home. He needs to be able to get rid of anxiety and chill out so he can avoid it in public. Obviously running around and flailing his arms might lead to accidents, but if he talks to himself at home while being a perfectly normal individual in public for 8 hours a day then there's no issue.

His conversational issues just need constant practice. Continue working on it and it will all work out. Even highly intelligent Autistics have delayed or messed up speech early in life. He might not even need any help and he might just do things incorrectly because he thinks it's interesting, but help anyway just to be sure.

Oh yea the "liking women too much" thing. Uhhh... trust me when I say that that will probably fix itself. Just reinforce boundaries to keep him out of trouble for now.

 

[Fino]

He sounds amazing!