New to children with autism

[Detrick]

My brother has a three year old boy with all the classic signs of autism (lack of eye contact, jumping on toes, slamming doors, fits of anger, etc). Both of them are here at my house for Christmas. I haven't spent a lot of time with them over the past couple of years and I am a little shocked at some of the child's behaviors. And where it is easy to tolerate some of these strange behaviors, I am very concerned about the future of this child.

How do you get the attention of an autistic child? How do you get him to mind? Why is he having so much trouble communicating? Are there some toys that I could provide that would help him to connect to the outside world? The only thing we have found so far that gets his attention is a "little einstein" DVD.

I feel so lost and stupid about the whole subject. Any quick pointers that anyone would be willing to share to make the holidays better or at least more tolerable? :confused:

Thanks, Detrick.

[peglem]

My brother has a three year old boy with all the classic signs of autism (lack of eye contact, jumping on toes, slamming doors, fits of anger, etc). Both of them are here at my house for Christmas. I haven't spent a lot of time with them over the past couple of years and I am a little shocked at some of the child's behaviors. And where it is easy to tolerate some of these strange behaviors, I am very concerned about the future of this child.

I can see how this would be a big shock for you. Your brother likely needs as much support and understanding as your nephew. Be careful about labeling those "angry" looking behaviors- I think most of the time its more of a fear type reaction, even though the typical person would not be afraid in the same situations.

How do you get the attention of an autistic child? How do you get him to mind? Why is he having so much trouble communicating? Are there some toys that I could provide that would help him to connect to the outside world? The only thing we have found so far that gets his attention is a "little einstein" DVD.

None of these questions have easy answers. Getting attention varies so much with the individual. It is likely, too, that he is paying attention more than you know- just doesn't have the normal indicators(eye contact/body language/response). Getting him to mind? probably isn't going to happen in a short period of time. I can tell you though, that ordinary consequence/reward discipline is ineffective with most autistic kids and frequently makes things worse. The anticipation of even a good reward can increase anxiety something awful. Trouble communicating is almost defining for autism. I don't know why. I haven't found a toy that can help with connecting. My child doesn't use toys the way they were designed to be used. My only suggestion would be to look for something that engages him sufficiently, but will allow or neccessitate others to play as well. The idea is to find something that will induce him to want others to join in. Either because he can't do it without others or because its more fun that way. I haven't found anything that fits the bill. My child will not engage for long with a toy that requires others and doesn't want others involved if she can do it herself. If you do find something- PLEASE let me know.


I feel so lost and stupid about the whole subject. Any quick pointers that anyone would be willing to share to make the holidays better or at least more tolerable? :confused:

Thanks, Detrick.

I've been dealing with autism for @ 10 years- I still feel lost and stupid most of the time. Its a tough puzzle to solve. As far as quick pointers- What I reccomend to get you through the visit is to find his obsession(s) and indulge him. It won't improve the autism, but may keep him busy enough that everyone else will have a better time. I also would avoid trying to do any outside the home activities with him unless his father knows it is something he handles well. Nothing ruins an outing quicker than an autistic meltdown. EVERYONE would be traumatized then.

I know you didn't ask, but I'm offering a bit of advice on how to support your brother in dealing with this. First of all- ask him how you can help. Parents of autistic kids often recieve loads of unsolicited advice and help from well meaning friends and relatives. We love you guys, but you really don't know what we're dealing with. And we don't want to constantly explain why the miracle cure/treatment somebody saw advertised is not something we're going to try. As you can imagine we travel a pretty rough road raising our kids. Its isolating. Try to be there in whatever ways your brother needs you to be. I don't know the situation as far as distances between your homes- but he likely needs a break periodically, or just someone to spout off to. Feel free to refer him to this message board. Everyone here is very supportive and understanding. It can be a relief just to share with those who understand. I hope the rest of your visit goes well. God bless you all.

[JungleWoman]

I have to agree 100% with peg.

One of the best things you can do is ASK them how you can help them. The people who have done this with us have been so wonderful in our lives. Like a beacon in a dark place.

I absolutely hate it when someone hands me a magazine with the latest spun story on how horrible autism is, or how you need to do this and this and this in order to 'cure' them.

Autism is hard. I can only imagine what its like for one WITH autism.

Recently, my family has realized that the best thing to do is dive in and help out. Like yesterday, for instance, we all kind of took a 'station' in the living room at my parents' house to kind of reign in Aaron *my son* to make sure he doesnt hurt himself or knock over something important or valuable.

But the thing is, we had to ask. They never offered to help until we asked. I would have LOVED for them to see that we were struggling *We have 5 kids under age 8!* to keep track of all of them and keep Aaron safe and try to enjoy the time we have with them. It was impossible to do alone and I was so surprised that they couldnt SEE it. And if they did, they just decided not to do anything-- maybe out of fear of us getting upset or maybe that he would get scared.

Asking them what you can do to help will be a great breath of fresh air. Ask them what they know. Ask them what works for them. Love them.

Hope that helps ;)

[Keggy]

I noticed you said classic signs of autism, did they tell you he was diagnosed with it?
If not, tread very carefully. Parents tend to react badly to others, in beloved family offering their opinions on their kids. Dads often will be in complete denial long past the diagnosis.
The child probably likes the dvd because dvd's and vhs's are concrete, rote info, dosn't change like when people talk or play. It gives them more time to decipher and understand.
If you are in the postition to do so, having a written schedule... like dinner time, or where you will be going posted will help. Our kids don't like transition, I would guess because they (like everyone else) want to know what is happening next, not just get dragged into it.
The child may appear to understand what someone is saying, but quite often they don't. My daughter used to fake understanind.
Don't assume a 3 year old can't read (many of ours can, whether the parents know it or not) but you can use pictures and words to make that chart so everyone will have a clue.... not to mention making it more enjoyable too look at.

[Detrick]

Thank each of you for your inputs. I have used each one of your suggestions aready. I am amazed that anyone can deal with this on a full time basis. My heart goes out to each of you.

All I really know so far is that somehow, the child has become even more endearing as a result of this disability....and I have a totally new found respect for my brother. Kind regards, Detrick.

[tgrimes]

All I really know so far is that somehow, the child has become even more endearing as a result of this disability.....

that is weird... I wonder about this same thing... it's almost like a phenomenon... it is only certain people and kids that feel this way, and I don't always 'get' it or get why.

[Detrick]

You are right...I was just trying to say something nice and take the high road.

As cold as it may sound, in reality, if he were my son and I were forced to deal with that situation 24 hours a day seven days a week, then one of the two of us would probably be institutionalized within a week or two. I know that I just couldn't do it.

Again, in reality, that is basically what has happened to this youngester. His mother committed suicide about a year ago (particially over this issue?). And his father (who is reasonably well off) has hired a full-time Nanny (and many sitters) and is gone from home all day everyday "working".

I guess that's why I feel so sorry for this little guy.

[peglem]

If he were your son, you'd probably deal with it and seek answers just like all of us here. Look, he's not your son, and already you came here seeking answers. None of us thought when our children were born that we'd be doing what we're doing now. And I thought you were serious about the endearing thing. What I see that I find terribly endearing is the intensity with which my child is able to experience joy (equal and opposite reaction= intensity of fear and anger). When she is happy, every cell in her body radiates joy, and it is infectious. I can imagine it would be overwhelming to have autism thrown at you overnight, but you adjust more slowly when you raise a child with it.

Its great that your brother can afford to pay for helpers.

Oh, and I don't think tgrimes meant that in a negative way. I think she just meant that its interesting that a special kind of person (like you) does seem to find autistic children endearing.

[Kristen (ColeysMom)]

Hi Detrick, I don't really have any words of wisdom to add here, what has been said so far I agree with 100%. I just wanted to also commend you on your efforts to reach out & understand your nephew. From the little you wrote about his family life, it sounds like you are the best hope he has...

Although, I do want to say that before my little guy turned 3 my heart was broken into a gazillion pieces hundreds of times a day. It's impossible for me to explain to you how it feels to a mother to manage the feelings generated within her due to a child that is unaffectionate, unresponsive, disconnected and seemingly depressed or disinterested. I feel for that little guy, but also your brother...my DH doesn't talk too much about how it felt to him to experience Coley's 'withdrawn' nature...but I can only imagine the degree to which it hurt him too. But having said that, we do have a responsibility as parents, as painful as it can be at times. That little guy needs extra special care. I'm guessing (or hoping) that atleast some of those babysitters/nannies are really therapists...because sticking your head in the sand will only make things harder on him.

And yes your brother does deserve some extra care and credit too...

[tgrimes]

Oh, and I don't think tgrimes meant that in a negative way. I think she just meant that its interesting that a special kind of person (like you) does seem to find autistic children endearing.


That's right... the fact you found him endearing, despite your annoyance or horror, that's a good sign. You will become very importannt to you brother over the passing years, I can tell. He may have a horrible time dealing with school but it's the people in the community and family that make the kid feel like an acceptable member of society, despite faults.
About using the term 'phenomenon' - i meant i never cease to be surprised at the number of accepting people I meet with my son, where he presents to them ands a total (oh, what is that word some at the school board use...) Oh, yeah... miscreant. Now I think this is around 20% of the human population with this gift, (and most of the other 80% work at the school)
But a typical scenario goes like: This is their first encounter with him and it ends with them looking so annoyed, as if they won't get over it for the rest of the day. And then to my surprise, we run into them next week, and they are very interested in him and what he is doing, and how can they help him? All smiles. He had this one lady at the publix bakery so mad the first couple times a few months ago because he would go in and spend his $2 allowance and make her get one of each of the per pound cookies, and keep it under 2$. Mind you, some of these are different prices per pound!I just hang far away and pretend I am very interested in bread, so she can't call me over to tell him to stop. After a few times, she got the drill. And she must've told everyone there too, because when they see him coming they get out three bags and SMILE. And nowadays, they call him SIR! He is a little ten year old sir, and he deserves it.

These are the same kind of stories you will enjoy with your brother someday,
so CHIN UP and stop feeling sorry for you brother or his son. It's just what IS, so enjoy the things you can about your nephew, when you can.

[Detrick]

Wow!! Now this is what I call a support group!! Thanks for all the positive vibes. I hope God blesses each of you this new year...as you have blessed me here. HAPPY NEW YEAR 2008 - Detrick.

[LIZARD]

Hey, Detrick. :)

I am sorry to be so late with this, having just arrived home last night from being with family for Christmas, but they have all made my job much easier here, too. :D I cannot add a word of advice to any of it, especially Grimey and Peg's posts. There is so much you can't possibly know about a child's outcome at such a young age. I clearly recall saying the specialists who eval'ed and dx'ed my son were "full of $h!t" when they insisted he was "very high-functioning" and would respond very well to therapies. Nearly 11 years later, I have a wonderful, loving, well-mannered young man who still has his share of problems but amazes me every single day with his abilities, including some useful ones I have no talent for!! :D I am even thinking optimistically about his future and truly believe he will attain independence at some point. He may be 30 yo, but aren't most kids today?? :D

The most important things are to get the eval immediately, keep a structured routine, get therpies started ASAP, and to push, push, push for results. I have a neuro condition myself that was believed to make living beyond infancy nearly impossible, or it would render me severely mentally impaired. Well, I'm 41 yo, college-educated, married (mostly happily :D ) 17 years, and mom to two awesome kids. Never, ever say "never"! :)

God bless, and please keep us up to date.

LIZARD :)