Possible Autism?

[kasar]

Hi everyone! What a nice board - I'm a frequent CB Diser but this is my first time over here. Here's a recent thread I started and I'd love to hear some other "expert" opinions:

http://www.disboards.com/showthread.php?s=&postid=6690452#post6690452

I really appreciate any suggestions or light you can shed on this! Thanks!

 

[Pea-n-Me]

He sounds a lot my my nephew who was finally diagnosed at age 9 with Asperger's Syndrome. It took years to get that diagnosis because he also had other "co- diagnoses" (like depression, anxiety and ADHD) so it was very complicated. Luckily his mother persevered and he got the treatment he needed. I had fears for his future but with treatment he is now doing well at age 16 (though it's been a VERY rough road - a nightmare, actually).

When I finally read about Asperger's for the first time, it all made perfect sense (though this was after he was diagnosed). Many kids aren't diagnosed until they enter the school system. It seems a shame, though, to wait that long when he could be getting help now. If his parents are that resistant I don't know what you can do to help them. I might research autism spectrum disorders and pervasive developmental disorders and have the information available if it ever comes up. Or you could just throw caution to the wind for the sake of the boy and give them the articles. (You need to be sure of your facts, though, because your relationship with these people may be put on the line by doing so). I might just wait a while, do my own research, and see what happens. Just MHO. Good Luck.

 

[Roo'sMom]

Hi,

I think you're right to be concerned.

Try this web site for more information (including a discussion about how to approach the subject to his parents):

http://firstsigns.org/

As many others have said- if he is 'on the spectrum'- the sooner he gets intervention the better!

 

[leise]

Hi Kasar, Love your Avatar BTW!

My ds who is 5 has ASD. I think it sounds like your nephew is "on the spectrum" too. Good for you for noticing! It is so important these things get picked up as early as possible. It's so hard for you, but if you could help his parents get a diagnosis you would be doing your nephew such a favour in the long run.

I was first introduced to the idea my DS had autism when he was about 21/2, by a good friend who got the conversation round to autism in a very general way, totally matter-of-factly. She said she knew an art therapist who had worked with autistic kids , and they were so interesting. She said he told her about how autistic children will take your hand to what they want, rather than ask. Then she said "Luke does that sometimes doesn't he?". It was done so gently I was not at all offended, just went away and looked it up on a website. Then I realised that Luke was indeed autistic, but when I told my DH he went mad and wouldn't discuss it. I subsequently discovered that DH's sister (who works in a special needs school) had already raised concerns to him which he had rejected out of hand. When he finally came round in the face of all the evidence, and I found out she too thought DS had ASD, I could have strangled her for not approaching me! I'd been struggling with the doubt and DH's attitude, and if I'd have known she agreed with me it would have all been so much easier. Eventually we got a diagnosis, and all is now well.

Is there a chance your SIL is having any doubts about his development? Sometimes mums don't like to talk about these things because it feels like you're trying to find something wrong with your child when there might not be. Could you just point her in the direction of some information? It doesn't help that the pediatrician seems to have given him the ok, but don't let that put you off; Luke passed a developmental check about 2 months before I started having doubts about him.

If you do decide to approach them, it might help to be positive about ASD; I know my DH's reaction was because he didn't understand autism, thought it meant Luke was going to die/ be in pain/ have a horrible life. Once he understood what it meant (none of these!) he was able to come to terms with it quite quickly. As someone else said, your nephew is talking by three, which is an important positive sign. If it does turn out that your nephew has ASD, he will still be exactly the same little boy they know and love now, after diagnosis as before, just that he'll be able to access the help he needs to learn and develop.

Sorry this is so long, hope it helps.

 

[Carrieberry]

I have a 6 year old son that is autistic and deaf. The onset of the symptoms started at anout 3 years of age. It has been very difficult to get a diagnosis for him because the doctor's were unable to say what could be attributed to possible autism and what was just delay caused by the hearing loss.
But I knew.

I did pleanty of research on the internet, and a good friend of mine has a brother I have known since he was 12. He has turrets, autism and OCD. The stimming signs were there (hand flapping and rolling on the floor with a blanket over his head, chewing on his blankie and grinding his teeth when he is over stimulated or angry, the lack of eye contact, the fact that he wanted to cut the heads off of all his toys (like Little people or other plastic figures) so he could line all the heads up in the window sill. All of these things were just not normal. To top it off, we have been working on trying to come up with a communication system for him because his autism is making sign language impossible. We have since come across PECS (picture exchange communication system) which has been wonderful, but was not introduced to us until the beginning of last school year. He has an assistant at school and is doing wonderful. He is becoming more social, and stimming less and less and is taking an increasing interest in actually being a functioning member of our family. It has been a difficult road, and unfortuneately we had to do most of it by ourselves. We live in AZ and both of our fmilies live in other states. But...you would be amazed by how much help is out there if you know where to find it and are willing to look for it. All of the symptoms I read on your other thread point towards Aspergers which is high functioning. Many Aspergers (what my son's therapists and school think he has) children grow up to lead fairly normal lives depending on the severity.My son's occupational therapist is married to an Aspergers adult and he is the head of the special education department at a local school. Like another poster said, if he is already talking, the chance is that he will do well-with the right intervention. It is a hard topic to broach, and I think you are wonderful for taking such a loving interest in this child. It is obviously bothering you and I think you won't be able to rest until you say something. Be prepared for their denial and possibly shunning you for awhile, but in the long run, they will have you to thank if they can get the right help. Acceptance of the problem and espescially of "the label" is the hardest part. Maybe you can bring it up next time he does something amazing like recite a movie. Then you can say that he must have a "gift for that like some Aspergers children." Sometimes the autism label is very scary. Then maybe you could simply suggest she look up Aspergers on the internet. She will find out it is a from of Autism when she does the research herself. If it were me, and it has been me, I would be more apt to look up something that might prove my child had a rare gift than looking up something that might show me he is not normal. Autism awareness thankfully is growing thanks to people like you!!

 

[Nik's Mom]

It sounds like he is in the spectrum. We had a heck of a time getting our DS (now 5 years old) diagnosed. We suspected something was wrong at about 2 1/2, but doctors kept telling us it was nothing. Well, finally at 3 1/2 we found help through our school district. Of course, I cried and cried when they finally confirmed my suspicions. It broke my heart. But in the end, I could say that I was so greatful that someone from my son's preschool finally said she saw symptoms too. He is now in a special day class and we are hoping to have him mainstreamed in a couple of years.

 

[jetsetter90]

Hi,

My son is 11 and is diagnosed with PDD. My suggestion to you is to mail them information on Autism with the things you see highlighted. Of course it would be anonomously. I know this is the chicken way out but after dealing with my new sil I would NEVER come out and say anything to her it would cause a Huge family fight.

They really need to get him early intervention so don't delay.

TTFN

Jetsetter90

 

[DisneyAnna]

I've enjoyed reading all of hte opinions expressed here~And I truly appreciate the respect this topic has been given.
My DS was diagnosed PPP/NOS- High Functioning Autism at the age of 3--he is now 12. DH was reluctant to accept that something was amiss with Adam, but I knew he wasn't hitting the developmental milestones within the proper timetables. The pediatrician kept telling me to relax, that we shouldn't compare Adam's development with that of our daughter, who is 3 years older.
He discounted my concerns of Adam's 'toe-walking' and lossof expressive language--basically telling me that I was imagining things.
I wish someone would have pointed out all the red-flags to me, and told me that I wasn't imagining things! We finally were able to get the diagnosis--at that time I had never heard of Autism, but yet, I knew it was the right diagnosis.

My advice to you is to admit to your SIL that you are uncomfortable bringing this up, and that it is in no way a judgement of her parenting, but that, because you love your nephew so much, you need to bring your concerns to her attention. That you would never be able to forgive yourself if she later learned that your nephew was in fact, autistic, and because you were afraid to offend her, you said nothing and delayed the diagnosis, and lost valuable treatment time. Maybe watching the movie "Son-Rise: A Miracle of Love" would help you--watch it together, and maybe she will see her son in it, or you can make comparisons to the behaviors in the movie to those of your nephew.
However, I hope that you will still be devoted to you nephew even after the fallout, and the diagnosis, if in fact he is found to be autistic. That is a devasting moment, because you realize that many of your hopes and dreams for your beautiful, amazing child have just been side lined. Its natural to mourn that your child is not perfect, but-speaking from experience-that doesn't meaan anything is "Wrong" with him. I have learned sooooo much from my son, and honestly Thank God everyday for him! Even his sister (now 15-fun age!!) adores him!!
I wish you the best, and I think you know in your heart that you must bring up the topic. Just do it with love and honesty, and support. Nothing is worse than telling someone of a problem, then walking away without offering support or solutions.

All my best!!
DisneyAnna--a.k.a. Adam's Mom

 

[illilady]

I need help with the same problem. My nephew is going to be 4 this week and I have noticed since he was born that he is different in many different ways. As he grows I pick up on new things that he does. I decided to research this and found that he has symptoms of autism. I could never mention this to his mom. I have spoken with the autism association nearby, an acquantance who teaches autistic children, a friend who teaches special needs kids, and have researched this extensively on the web. I have taken tests as if I were the parent and looked at the scoring. He has classic signs like: he doesn't answer to his name, you think he is deaf(from 5mos I thought he was because aside from not responding when you called him, he never imitated sounds that he heard) echos everything you say, won't look at you when you are speaking to him, can't understand what you are doing when you point at something and want him to look at it, wants things done in a certain way and if you don't do it he freaks, he's obsessed with one toy or topic and if you try to talk about something else it's like he doesn't hear what you are saying he has to keep telling you about what he wants to tell you, there is no reasoning with him if he wants something he will not stop saying it even though you try to stop him, he has only certain foods that he will eat and he cannot stand the textures of most foods in his mouth, he did not say much up until 3 years of age and then had a hard time with different sounds, he has been disinterested in learning. He now has a teacher come to the house one day a week, but I haven't heard any feedback on whether she sees anything different yet. I have spoken with my mil and she agrees with me but neither one of us will speak up. I went ahead and spoke with his pediatrician (well his nurse) because he is coming in for his 4year check up. They said we cannot discuss the patient with you, I told them I want to discuss him with them. I explained I was afraid that he would fall through the cracks until he was in Kindergarten and early diagnosis is the best thing for the child. (Last night I saw on a website that 70% of autistic cases are overlooked by physicians) They told me that they do developmental tests. If nothing comes of the visit to the Dr. I will have to think about getting them to notice that he is displaying signs of autism or aspergers. I have been reading the suggestions on previous threads I think that some of them are great. I just thought of this one, how about that I was watching a show on autistic children and noticed similarities in behavior (my sil nows I watch the discovery channel and the like) I of course will prelude into it delicately.

Okay, so any one think that he has ASD by his behaviors? and does anyone think that my idea is a good one or do you have another suggestion. I love this boy so much and he is being disaplined incorrrectedly because no one knows how to communicate with him. Here's a thought maybe if I could learn how to communicate with him the right way and they see that it works breaking the ice with them won't be so hard. Again I could say I saw a show and noticed similarities and this is how they got through to these kids.

Sorry to go on and on, I'm just trying to fix this sooner rather than later. I know eventually someone has to see what I see but as I stated it would be better to have it happen NOW.

Please help!

 

[SueM in MN]

He now has a teacher come to the house one day a week, but I haven't heard any feedback on whether she sees anything different yet.

If he has a teacher coming to the house one day a week, he has somehow gotten hooked up with services. Do you know how; whether it was from the doctor's office or the mom got in touch with the school district?
Somebody referred him and the fact that he is getting some kind of services is a good starting point for discussion.
Whether he has autism or some other actual diagnosis at age 4 isn't as important as him actually getting services that are appropriate for his needs. (The actual diagnosis will matter more later, but right now, without a specific diagnosis, he at least is started in the process of getting help).

 

[cometzero]

I have a question and I may be completely off base here, but was wonderring if it would be helpful just to show this thread, it would show how much you care and the experiences others have had,Lyn

 

[illilady]

He was hooked up with a teacher because my sil contacted the school district and he was tested to see if he could get into preschool. He tested average for his age and the school contacted him and said that he was eligable for an in home session once per week. I really don't think it was because they noticed anything. My sil would have said that the school felt that he was in need because he might have developmental problems and that they had seen this or that. She would have told me. So I don't think he is getting any help, unless the teacher notices something. Maybe I should talk to the teacher!

Also, in response to the last thread, I would have to speak to my sil rather than let her read something and if she knew I was researching this to the extent that I am, I think she would be upset with me. If she is in denial that anything is wrong with him, I certainly would not be the one to try to convince her, that would have to come from a teacher or physician. She has a 1 year old who is developing normally and she is amazed by him like she thinks he is a genious. I say things like: oh my daughter was doing the same things at his age. She also gives the one year old something new to eat and she either says, oh I trying him out with new textures or if he doesn't like the new food she'll say, oh he doesn't like the texture. In reality, you don't have to try him with new textures and it's probably the taste that he doesn't like. It's only because she did notice that her first son couldn't handle most things in his mouth, you basically had to force feed him when he was a baby. And know he will only eat 4 foods slow as molasses and plays games all the way through, it takes him 2 hours to eat 4 chicken nuggets for lunch most times.

Also, something else I didn't mention. He doesn't do finger play but I think he has a couple of nervous ticks I want to call them. He twists his mouth to the side. And he constantly makes a sound like shhh shhh shhhh shhh! You can tell him to stop but he won't.

 

[SueM in MN]

He was hooked up with a teacher because my sil contacted the school district and he was tested to see if he could get into preschool. He tested average for his age and the school contacted him and said that he was eligable for an in home session once per week. I really don't think it was because they noticed anything. My sil would have said that the school felt that he was in need because he might have developmental problems and that they had seen this or that. She would have told me. So I don't think he is getting any help, unless the teacher notices something. Maybe I should talk to the teacher!

I would say there is a close to 100% chance that he is being seen by the teacher once a week because of some problems for 2 reasons:

1)School districts don't have the money to send out a teacher to visit an "average" child once a week. Most have problems with the money to pay for visits for kids with special needs. Some might have some "enrichment opportunities" that people can bring their children to, but no one is going to pay a teacher to come out once a week (even for an hour a week) with a child who is testing average for their age.
2)He had to qualify for it. If it was a service being offered to people just because they had a child of a certain age that lived in the school district, the family would have just had to call, give his birthdate and verify that they lived in the district. They wouldn't have had to qualify and wait for the school to call to tell them he was quailified to have a teacher.

Now, on the other hand, it's very likely that his mom is in denial about the the whole thing. She may be telling herself and anyone she talks to that he tested average for his age and the teacher is just visiting for enrichment. That might be what she has to tell herself. I know my sister did sort of the same thing with her son - he has Asperger Syndrome, so he "blended In" better than it sounds like this boy does, but it was many years before she could admit to herself that he had problems.

My personal feeling is that going behind her back to the doctor and the teacher are going to be counter-productive. The teacher is not going to be able to tell you any more than the doctor's office did. IMHO, going to the teacher would make the mom even more defensive.
If you feel you need to talk to anyone, I think you need to talk to the dad or mom - maybe something you read or saw on TV made you think of the boy and you thought of their family.

 

[illilady]

I appreciate your feedback. I didn't realize that he couldn't just get a teacher to come to the house, but I truly do not think that they let on to my sil that there is anything wrong with him. She would have mentioned something to me like, they think he is having this problem or that. Something!

I will however try to approach the subject like I've been thinking to do, which is to tell my sil that I saw a show on autistic kids and noticed a few similarities.

If you could let me know of some ways that I could learn to interact with him. There has to be some guide lines as to how to communicate with him a little better rather than have everyone scream and yell, loose their patience and spank him. It is so wrong. Someone has to be the calm one, the voice of reason. The mother, father and mother-in-law feel that spanking him is the best way to get through to him. For children without ASD spankings don't always work. With him they definetly don't, so now they use the belt. I can't open my mouth about how they discipline him more than I have already, which is to say that I have tried to convey that not every discipline works for every child and they are not disciplining they are only succeeding in hurting the boy. If my sil thought for a second that he had a problem I don't think that she would continue to take it into her own hands to solve problems, she would realize that a child with a communication and developmental problem would need some other form of behavior correction. So again, I don't think anyone has let on to her that there is anything wrong with her son.

 

[SueM in MN]

I appreciate your feedback. I didn't realize that he couldn't just get a teacher to come to the house, but I truly do not think that they let on to my sil that there is anything wrong with him. She would have mentioned something to me like, they think he is having this problem or that. Something! ..............
So again, I don't think anyone has let on to her that there is anything wrong with her son.

If he was evaluated to see if he is eligible for services of the teacher, the family would get a copy of the evaluation. The teacher also makes a plan for what she is going to do with the child. The family would have a copy of that and it would have been explained to them.
The teacher would not be able to give a definite diagnosis, so it's very easy for parents in denial to keep denying that anything is wrong.
This website ( www.pacer.org ) has a lot of information about educational services for children with disabilities and how these work.
People often use denial to help them cope with situations that they can't face. Denial can be very powerful and complete.
In my situtation, I know now that my sister was told by her son's doctor and by the school people at age 4 that her son had some problems. It wasn't until he was in about 4th grade that she talked to any of the family about this.
I also know when I was a Public Health Nurse that I worked with some parents with very severely disabled children who totally denied any problem. One family had a 2 yr old DD who could only roll, didn't talk, could not sit up. She was not their first child, so it's not like they didn't have any idea of what to expect. Also, even though the doctor had referred that child to me because of the problems (and had discussed his concerns with them), the family denied that anyone had talked to them or noticed anything unusual with their child.

I will however try to approach the subject like I've been thinking to do, which is to tell my sil that I saw a show on autistic kids and noticed a few similarities.

That sounds like a good plan. Her denial may be so complete that she seems to not hear you. Have some resources to give her; like, print out some information on autism - especially any that the TV show gave. I wouldn't share this thread with her. She may be mad that you are discussing it with other people.

If you could let me know of some ways that I could learn to interact with him. There has to be some guide lines as to how to communicate with him a little better rather than have everyone scream and yell, loose their patience and spank him. It is so wrong. Someone has to be the calm one, the voice of reason. The mother, father and mother-in-law feel that spanking him is the best way to get through to him. For children without ASD spankings don't always work. With him they definetly don't, so now they use the belt.

I'll leave the "how to best deal with him" to the parents of kids with autism who frequent this thread.
I can tell you that punitive ways of dealing with kids with autism are especially counter-productive. The child is already in his own world and some of the main aims of therapy are to try to coax him out of it and into "our" world. Extreme physical punishment just is more "proof" to him that he is safer where he is.
People like teachers, doctors and nurses are "Mandated reporters" for child abuse in every state. That means if they are aware it is happening, they are required to report it to the Social Service Department for investigation and follow up.

 

[illilady]

Please don't misunderstand me, he is by no means being abused. His family are good, loving Christians. The kid just doesn't listen and it's frustating and infuriating. If they only knew how to deal with him better. If my sil has been told that there is something wrong and is in denial, how is she ever going to know how to deal with him?

 

[SueM in MN]

Please don't misunderstand me, he is by no means being abused. His family are good, loving Christians. The kid just doesn't listen and it's frustating and infuriating. If they only knew how to deal with him better. If my sil has been told that there is something wrong and is in denial, how is she ever going to know how to deal with him?

I didn't mean to say that he was necessarily being abused; only that if there is anything suspect of it, there are people who are mandated to report suspected abuse.

 

[leise]

Hi there illilady!
I just wanted to say that your nephew is lucky to have such a caring auntie.

With regards to how best to communicate with your nephew; autistic children, and oother children with communication disorders often have trouble processing voices and other aural communication.
You need to make sure you speak slowly and clearly, and keep messages short and to the point. As few words in your sentences as possible. If he doesn't understand, give him time, and repeat what you said in exactly the same words. Give him a chance to process the message, and make sure you don't change it so he has to start again.
Also just ask him to do one thing at a time, and be very specific.
For example if I want my 6 year old autistic son to pass me the telephone, I will say "Luke pick up the phone", then "Luke give the phone to Mummy", instead of "Pass me the phone, please". Try not to use "I, you, me, etc" and use his name and your name - autistic children often have great difficulty with pronouns.

Also use visual cues as much as possible; often autistic children are much stronger visual processors than anything else. You don't have to know sign language , just use as many gestures as you can, eg/ mime drinking from a cup when asking him if he wants a drink, put your hands downwards as you ask him to sit down, put a hand up flat when asking him to stop. If you are trying to explain something doing little very simple drawings can help, ( and I mean simple, like stick men, you don't have to be an artist!).

Another thing it's worth remembering is that often these children have difficulty understanding long explanations of why they should or shouldn't do things. With my son I got most success just by telling him something was "Not for touching" or "Not for playing with", or just "No -------" (insert activity you want him to stop, eg/ biting, kicking, hitting etc). He would accept this instruction as adequate, whereas my other son with no special needs would always need a full explanation or he just asks endlessly "why?"..

The main thing I think you need is patience, but it is so rewarding if you do get a positive response. It can be so frustrating trying to parent these children, and you are right when you say that physical punishment is counterproductive. There are some things which they will just find too hard to do, that you may expect a child of their age to be able to, such as sitting at a table for a meal. The harder you push the harder it becomes for them. They need to take little, sometimes tiny steps. Remember that many social situations are terrifying for them. They need much encouragement and you sometimes have to let them take it at their own pace. This isn't to say they won't get there eventually.

Sorry to go on for so long, I got a bit carried away. Hope some of this helps, and good luck with your SIL. It's very hard on you but remember however upset she may be with you initially she will thank you in the end. I think your plan of using the TV programme ruse is a good one; well it worked on me when a close friend first alerted me to the "A" word...

All the best, Leise

 

[illilady]

thank you everyone for your info and input. It would only make sense that since autism is a sensory problem that how he hears things would be affected. I will make a point not to over explain things like I have a tendency to do. After my sil is yelling at him I try to interject with a reason thinking that I am appealing to his intelligence when in reality it has nothing to do with that, right?

I want you to know that my sil used to be a stress free, roll off her back, go with the flow kind of person. She is now fried because of constantly day after day having to deal with the same problem. There never seems to be a change. If that isn't a red flag, I don't know what is. She has a one year old who is into everything, very bright and a joy to be around and she can't even enjoy him because of now having to deal with two boys one with ASD, all she can see is that the little one is driving her crazy because he is into everything.
How I wish this would stop. Four adults live in that house am I the only one who realizes that someone else needs to help them all to deal with this boys problems. Sometimes it's all I can think about and research just to find a way of getting the message across.

At first when I noticed something different about him, I wanted to make sure that I was seeing what I was seeing and still I second guessed myself. Please someone tell me that with all of my nephews symptoms that you would come to the conclusion that I have. I'm not over reacting am I? Someone has to eventually see what I do, in school, the doctor, someone, right?