Tzoya - Thanks for your response, but I just think I need to clarify a couple of things here. The subject of Autism is not brought up on a daily basis. It was brought up four years ago and the words have not been spoken since. The reason my sister and I got on the subject last week about it was because when I talk to her every day she is asking me questions are far as 'Why are my kids doing this when no one else is ' etc....She noticed a lot of things that maybe brought up red flags for her or I perceived as such. Since she questioned their actions on a pretty daily basis (at least 4 times a week) I thought now might be the time to broach the subject again. I thought since she was asking me why I thought they did certain things, that now she might be open to the subject again.
And I'm sorry you miscontrued my words thinking I was going to help my nephew with kindergarden. I just believe knowlege is power and if I learn something to better help understand how he can better interact with kids, I can pass that along in my own interaction with him and other children he plays with in my company.
This is not about someone being right or wrong. I waited four years between bringing it up because I thought she sounded more open this time. I know that my sister is not ready and I will react as such.
That was real good advice as far as interacting and modeling behavior for autistic kids. I will read more on how to do that and put it into play the next time I visit with them.
It sounds to me like she is on the periphery of discovery. Be ready to support her ... since she is resisting that much, it probably will be tough on her.
Thinking of you both ... let us know how it goes.
[QUOTE=tzoya]I think you did the right thing to bring it up once. Now it's up to your sister. You CAN'T be in her face about this. The BEST thing you can do is be there for her and for your nephews. If you like, find out all you can about how to interact with autistic kids and model this sort of interaction for your sister. Your nephews will need a loving aunt around, so rupturing your relationship with your sister, who is in full denial, will not help them. NEVER mention the "A" word again unless she does. If she starts to address their delays but uses other terminology, use HER terminology (developmentally delayed, speech delayed, etc.) This is not about the fact that you are right. This is about maintaining your relationship so that you CAN be there for her and for your nephews when she finally wakes up and smells the coffee. You can do no more at this point. If you insist on being "right" you won't be "there."[/QUOTE]
This is how my EI therapists handled it. And it worked. I just wish they had been able to bring up a possible dx at SOME point ... but this is an excellent way to handle it, no question!!! Help the kids, and wait for Mom to find out her way.
ETA: I do not think it was me who put them off suggesting a dx .... it was where they worked.
Hi there. Just wanted to chime in that I can relate--on both sides of this. First, my sister who works in special ed, approached me when dd was about 2 or so. She brought up Autism, the first time I had heard autism specifically (except w/ regard to geneticist testing for Rett's, Prader Willi, etc.). Since dd had been in therapy since 8 mos, & I had been very open w/ regard to her delays, etc. it was not shocking news. She was able to give me TONS of info & is now helping me with the eval process and more importantly, dealing with the school district.
On the flipside of my reaction, & my appreciation for my sister's concern & recommendations....our other sister has reacted much differently. My nephew just turned 6 & is, in both my & this other sister (worked w/ many kids on the spectrum) is autistic. He's been in EI & still in speech & OT. Loads of sensory issues, speech apraxia, talks in a high-pitched voice, walks on tiptoes, limited eye contact, talks on & on about his topic of choice, behavioral issues, etc. My sister & I have 'danced' around the topic with his mother. We are fearful of her reaction, as she too is VERY sensitive & seems unable to really deal with this. We are afraid she would 'cut us off,' as she has done this for months at a time or blown up at things much minor. I think, sadly, she has a lot of guilt and feels her son's issues are her fault. Unfortunatlely, she does not verbalize this, so no one can explain it's not her fault. I've tried to, in a roundabout sort of way, to discuss it with her.
We did talk a bit more the other day. I explained the different places we were looking at for our dd's eval. I asked if her son had ever had one--choosing my words wisely. I came at it from a perspective of it helping him do better in school. I said "kids on the spectrum OR on the fringe of the spectrum--with these sensory, speech, & behavioral issues..." as opposed to just saying "Autism." I hope it helped. Btw, nephew is in private school now...will enter district in August. My concern is that this will all blow up in my sister's face...so I am trying to bring this all up slowly.
I hope that ultimately your sister will come around & be grateful for your concern and openess. It may take a long time. It is a very difficult thing to hear--that your child is autistic, and there's still so much wrong info out there. Despite how far our society has come, there is still such a negative connotation when it comes to developmetal disabilities (& psychological issues for that matter too!). Your sister may also think Autism & think of Rain Man, or she may think it is because she was a bad mom, or other common misnomers. I think you were right to say something, and I applaud you for doing so.
Thanks Tzoya and foxl.
That makes me feel a whole lot better. I knew I was taking a risk when I brought this about and I WILL DEFINITELY take your suggestion and let it rest. I would never want anything to break up the relationship between my sister and my nephews who I love so much. <<HUGS>>
I have a sister who my mother and I both suspect is on the spectrum herself. She had low oxygen when she was born, didn't speak until 4 or 5, and many other symptoms. She is now an epileptic, many who have autism also have epilepsy. She has two sons, one is 16 and the other 13, and both are most likely on the spectrum. I read recently that a certain anti convulsion drug she was taking while pregnant can cause it. They too have a long list of symtoms. I too have brought up autism spectrum disorder cause really its pretty obvious, and she gets defensive too and tells me the only thing wrong with them is they are slow. She also tells me my sons don't have autism because they don't bang their heads and all autistic children do. They too are just slow like her boys. I wish. The school once pushed her very hard to take her youngest to a psychiatrist. It was a long wait as always and at the last minute she cancelled and said he didn't need to go. They had no early intervention and her regular dr finally suggested she take the oldest to the local preschool when he turned 4. They have been in special ed since they started school, and without an official diagnosis, and they are about 3 years behind and she was so excited by that, they were much further behind than that before. The 16 year old has friends for the first time. I really feel bad for them cause I can't help but wonder where they would be today if they had had that early intervention. Its a tough situation, but if she's like my sister it doesn't matter who it comes from, she will get defensive and resist it. Maybe it needs to come from an actual doctor? She may not have been so defensive if it had come from a dr, but she would not accept it from the school. The most important thing though is that they are in early intervention and preschool and at least are getting some help. My boys still dont' have a diagnosis but everyone at the school and at early intervention treated them like they did have one. Maybe that really is the most important thing.
Have you looked at the autism checklists? Sounds like you have been researching so you probably have, but just in case, http://www.autism-pdd.net/checklist.html and http://www.childbrain.com/pddassess.html.
Wow, that's a tough one.
I haven't been in this situation so I don't have any real advice to offer. However, a few thoughts come to mind...
Is there a reason (past childhood competiveness, an inferiority complex, perception of bossiness/nosiness) that might be causing your sister to reject your insight just because it's coming from you? Sibling relationships can be complex. Is there another family member that you might enlist to talk to her that she might be more receptive to? You don't mention guys at all. Are either/both of you married? If so, can you talk to your brother-in-law, or have your husband talk to him? What about your parents?
Is there something else going on with your sister? Is it typical for her to not speak to family members for months when she gets angry about something? Has this happened before? It seems to be a very severe reaction to the situation.
Hopefully someone else will have been there before and have some good advice. Good luck!
None of what you think is wrong or off-base. However, it's NOT up to you. Unless what your sister is doing is abusive or legally neglectful, how she raises her kids is HER business. As her sister and their aunt, you need to be there for support, nothing more, nothing less. You've already given her your advice and it was roundly rejected. She may be quite wrong in rejecting what you say, but that's HER choice. You will only hurt and distance your sister if you keep thinking about this. Just be her sister and friend. Don't make her afraid to confide in you or be around you. When the day comes when she finally accepts the dx, you'll be there to comfort her at a point where she'll be open and in need of your advice. Maybe some day the two of you can find out about autism together and work with your nephews together. So far, that day has not come. If you value being close to your sister and your nephews, drop the subject completely. Don't even allow the word to enter your mind. You've made your position perfectly clear to your sister. To keeping going back to it is going to alienate her, which is NOT what you want. Also, when she DOES come out of denial, NEVER tell her "I told you so," no matter HOW tempting. She'll KNOW you were right and she'll be more open to allowing you to join her in helping her children if she doesn't feel like you "won."PS -- The questions you've asked about getting him ready for kindergarten are issues that the school needs to talk to your sister about. I have to repeat, this is not up to you. It wouldn't matter if we gave advice to you about how to help prepare your nephew for kindergarten -- it's not your job. That is your sister's and the school's job. If you interfere here, after your sister has given you PLENTY of indication that she wants you to butt out, you are risking not being allowed into your nephews' lives at all. Please step back. If, some day, you have an autistic child, you can apply all this knowledge to your own child. I am both an aunt and a mother and have actually been in the situation of an aunt who wanted to advise about my sister's child's issues. I found I could only go so far. After that, I had to let it be if I wanted to remain the welcomed aunt. You need to do that, too. I'd hate to see you shut out and I fear that is what will happen.
Hi Auntie,
Yes, he sounds autistic. But- he's getting help. You mention occupational and speach therapy, social skills training, and pre-school. If he's getting all of the help, maybe your sister is right - why label him autistic (I wouldn't care, but if she's not wanting to do that, so what)?
What difference would it make? They're treating his delays, which is what they'd do if he were diagnosed as autistic. Autism is not a "thing" - just a set of delays and/or impairments. Maybe everyone should lay off the 'autism' label and just stay the course with the already present interventions? As long as they are getting help, it doesn't matter whether or not she refers to the delays individually or just says the work "autism" as a short-cut - it's just different ways of saying the same things and it sounds like she is dealing with it (he's in therapy, etc.).
The only reason I would push for an autism label is if it meant that he'd be getting more services through the school. Do you know if this is the case?
I thank everyone for your advice and knowlege. It is such a hard thing and it feels like such a thin line to cross when you are talking about someone's children. I would never do anything to hurt my sister and I love her and my nephews so much.
I think one of the problems that I was hoping to let my sister see is that she only thinks they are speech delayed and she keeps on saying that all three of them will grow out of it. And I understand that the "label" of Autism is not important as long as they are getting the help they need, but what if they think they don't even really need all the help they are getting?
I just hope I did not make a big mistake. I just want what is best for my beautiful nephews.
Sorry, forgot one thing. I also thought the diagnosis would help them receive better school services from the state. We have some great schools here specifically for Autistic Children that I read were outstanding.
He is no longer getting the 'social skills' training at school. The teacher was just going to do this as an experiment to see if it would help, but decided to forego it because she did not want to force relationships on him. Does anyone have any advice on how to make a child more comfortable in social situations and want to play with other children? He will be starting kindergarden in September and that is the thing that gives me the most trepidation.
The word Autism is such a scary word....perhaps if you broke it down a little more.....for example...."he seems to have a lot of sensory issues".....
ANY child can have sensory issues and it doesn't quite seem sooooo scary. Focus on just ONE thing....the head banging for instance.....toddlers don't just head bang for NO reason.....could be wrong.....but I don't think you'll find it in "waht to expect, the toddler years)......it is NOT typical beahvior........ps.......I have a head banger......I know how upsetting it is !!
If she could at least admit to ONE thing that needs working on, and would seek a consult for JUST that......then perhaps.....a "professional" would get a good glimpse of ALL the symptoms and help out.
I have read quite a few stories here about moms being angry with teachers, day care helpers, etc who brought up Autism.......
My daughter has Down syndrome......and even though I KNEW she had all these excess sensory needs.....I didn't even think she'd have a SEPERATE diagnosis of Autism....just thought they were linked to her Down syndrome....she has always been a sensory seeker !
I wish you luck....you are in a VERY tough spot......
Okay.....
Need to Edit myself.....
After writing my last post, I was wondering about head banging & I googled it......
VERY COMMON !!
Head banging on it's own is common.....but combined with OTHER issues could be a flag for Autism.....but yes....I am corrected.....head banging can be very common in youngsters !
SORRY !!
As a parent, it's not easy to hear people talk about your child's problem areas. I would dread talking to my son's preschool teacher because she always had something negative to say, seemed to think she knew all the answers, and didn't seem to really *like* my son. However, because I shared *some* of her concerns, I pursued evaluation and my son eventually got the autism diagnosis. (Btw, the teacher didn't say it was autism).
Here's some good advice on sharing concerns parent to parent:
http://www.firstsigns.org/concerns/parent_parent.htm
I agree that the important things is that your nephews are getting early intervention from the school district. They will certainly see the red flags that you see -- and I agree that they are indeed red flags.
The "I like chickens" thing is probably "delayed echolalia" aka "scripted language" -- most likely something he heard on tv.
The head banging, picky eating, and sitting backwards on the toilet are probably signs of sensory processing problems. Not all autistic kids are headbangers, but nearly all of them have some sensory processing problems. Here's a checklist to help identify them:
http://www.sensory-processing-disorder.com/sensory-processin g-disorder-checklist.html
Luckily it's autism awareness month and your sister might see some things on tv or in the newspaper -- maybe it will finally click. Good luck with everything.
Hello,
I have looked through this forum a lot and am so happy with all the knowlege and advice given. I am hoping someone can help me know with my 3 nephews - age 5, 3.5 and 20 months.
Please forgive me if this gets long, I am just at my wits end on what to do.
For 4 years now, I have suspected that my 5 year old nephew maybe has autism. At the age of 18 months he still was not speaking and his pediatrician suggested Speech Therapy. Along with not speaking, he was throwing wild tantrums and would bang his head on the floors, walls etc..whenever he was upset. He also did not have any pretend play and would not play with toys appropriately or at all. All he ever wanted to do when he was over my house, was open and close cabinet doors (which he would do for hours if we let him) and turn on and off light fixtures.
When the pediatrician suggested speech, I thought it was a good time to gently bring up that maybe there was more going on and voiced my concerns regarding autism. My sister did not want to hear any of it. We had a huge fight and did not speak for months. I did not bring it on since.
My nephew got into Early Intervention and at around 2 1/2 years old, he started slowly speaking. He is now 5 years old and has made great progress in his speech, but does still not play with toys at an age appropriate level, does not interact with children at all. As a matter of fact, his teacher suggested to my sister that in school she will begin partnering up with a different student each day to try and work on his social skills because during play time, he just wants to play alone. You also cannot have a conversation with him. He knows a lot of words and he does speak, but not appropriate conversation. He's as smart as anything. He knows all of his colors, number, shapes etc...he even has a great knack for directions. He only has to go someplace once, and he memorizes it and can tell you how to get there. He is disruptive in class because in the middle when the teacher is talking, he will come out with some remark totally unrelated to the discussion in class.
My middle nephew is a little more than 3 1/2 years of age. He is also in Early Intervention but seems to be having a lot of troubles also. He does not look you in the eyes when speaking. When I talk to my sister, she always comments that she thinks he is mad at her because he never looks her in the eyes when talking. He also does not respond when you talk to him or call his name. He does not know how to use utensils and has a great difficulty eating. He only eats two foods, if that, and is always choking on food. He does not have pretend play and does not play age appropriately. He does not play with other kids in his class also and shows no interest in them. You also cannot have a conversation with him and does not speak appropriately. For example, every day he gets on the bus, he tells he bus driver 'I like chickens.' My sister has no idea where he got that from because he does not eat chickens, etc....And I don't know if this is valid or not, but he is in the process of getting potty trained, but when he does go pee on the toilet, he has to sit backwards facing the tank. And when he poops in his diaper ( he has yet to be trained on that yet) he takes the poop out of his diaper. He also has no fear and a very high threshold for pain.
My youngest nephew (age 20 months) just got accepted for Early Intervention and will begin shortly. He is exhibiting the same symptoms. He bangs his head, does not speak, except 'mama' sometimes and bangs his head. It's to the point where my sister says "Why are all my kids head bangers."
I finally brought up the subject the other day with my sister on the subject and she totally blew up at me. She said she is never going to speak to me ever again. And she said her children are fine and that I should get off the idea that her children might have autism.
What I need to know is Did I do the right thing? Am I totally off base thinking that these symptoms exhibit signs of autism. I feel so much time has already been wasted and they are not getting the treatment they need and my middle nephew is getting worse. What can I do for someone who does not want to get their children help? Has this happened to anyone one?
I really appreciate your help and sorry for being so long. I just love my nephews so much and I am afraid that I have done irreporable harm to my relationship with my sister.
Thanks for listening.
It is a very tough situation to be in--you want to help your nephews but don't want to alienate your sister...I am sort of going through the same thing with my sister and my nephew. Her son is 5 and has more autistic tendencies than my son who was just recently diagnosed PDD-NOS. Her son toe walks, lines up toys repeatedly, is obsessed with trains and spongebob, had a severe speech delay that is beginning to resolve some, makes little to no eye contact, spins repeatedly and the list goes on. My sister let me know that she thinks that I am "crazy" for "having my child labeled." It was suggested to my sister by my nephew's early intervention teacher and speech therapist at his IEP meeting (he was in the program for his speech delay) that he is showing some strong autistic tendencies and needs further eval's. However, she only became angry and confrontational with the teacher for even "suggesting it.
My sister is a very stubborn and sensitive person. My mother also brought up the same thing and did not speak to her for months also. Also, on my oldest nephews last progress report meeting with his teacher, occupational & speech therapist, they brought a lot of things to her attention regarding him interupting class with his inappropriate comments, repeating the same things over and over again (he will have one sentence and just say it repeatedly) and his social skills among other things. My sister was so mad after the meeting that she was thinking of taking my nephew out her class and putting him in a new one. She wrote the teacher a real nasty letter stating that she was picking on her son and that he did not have any of the problems that she discussed with her. So it is just not me or my mother, but the teachers also.
A lot of her problems stem with she feels that I favor my other nephew, which is totally not the case. My sister who I am having problems with lives over an hour away, so of course we do not see them as much as my nephew who lives in the same town as me. She as just been a very sensitive person her whole life and she lashes out at everyone, including the teachers, who try to give her some insight into her children.
I don't blame her for being defensive. It is such a difficult situation and I'm sure she feels like she is protecting her children. But she will not even look into any of the literature of websites that I bring to her attention.
Do any of there symptoms sound like it could be autism? Am I going in the right direction? Thanks so much for listening. This has got me so upset.
Thanks for your input Susan. You and I are sort of in the same boat. I am worried to about when my oldest nephew goes into kindergarden. Besides just the obvious social and language delays he has, just the little things like he does not know how to tie his shoes or snap or button his shirt and coat. In kindergarden, I don't know if the teacher will have time to soley spend his/her attention on dealing with the little things like that.