K.H. asks from Eugene, OR on November 01, 2009
How to Respond to a Friend Who Thinks My Toddler May Be Autistic
I just recently had a friend suggest to me that she has been concerned "for a while now" about my toddler (22 months). She told me that she thinks my daughter might need to be assessed for autism, Asperger's and/or sensory integration disorder. I was shocked, dismayed, and extremely upset to have her suggest this out of the blue. I have been an emotional wreck since. What upsets me most is that while I think she is so completely wrong, she works with children with special needs, so maybe she does know what she is talking about. (And I'm also pissed about the manner in which she told me...) So I did a home assessment for social/emotional development. A score over 50 means your child should be assessed. When I scored my daughter, I only got 35 points. My husband and sister both scored her at 30. I also did an autism checklist and she didn't even register on the scale at all.
So where the heck is she getting the idea that my daughter needs to be assessed? I am aware that my daughter is strong willed, independent, and has frequent temper tantrums-but what toddler doesn't? As far as autism/Asperger's goes, she doesn't have any of the classic symptoms: she doesn't do repetitive movements, like arm flapping, she doesn't stare into space or rock back and forth and she doesn't isolate herself. My husband and I believe she is really smart (maybe too smart and has mommy and daddy wrapped around her finger!) She can count to 18 and can say her abc's; she can recognize most letters; knows all her shapes and colors. She is also incredibly verbal and chatters up a storm very coherently. No one in my family thinks she has any kind of disability.
So, my questions are: how should I respond to my friend, as I am so upset about what she said and how she said it that I don't want to talk to her right now. And, should I have my daughter assessed or talk to her pediatrician? What are the signs of the disorders she suggested in toddlers? I just don't know what to do. Thanks for your help!
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More Answers
J.C. answers from Dallas on November 01, 2009
That's really a hard one to answer. Personally, I would have mixed feelings, but I would definitely ask my pediatrician's opinion. I would also ask your friend what drew her to this conclusion. If she works with special needs children, she may have noticed something that you haven't. I would want to know what it is that your friend observed. Is she someone who sincerely offers her concern or is she a spiteful person? If it's against her character to intentionally hurt someone's feelings then I would want to know what she sees that you and others who aren't familiar with special needs children don't.
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M.P. answers from Portland on November 02, 2009
I would talk with my friend and let her know that I was hurt, etc. Wait until you can do this calmly. Word your sentences using "I" statements so that you are letting her know how you feel and not accusing her of anything. "I am hurt by the way you said that my daughter may be autistic." sort of statement. Once the two of you have handled your hurt feelings ask her what she sees that has caused her this concern. Keep in mind that you are communicating with her and not venting.
From the description of your daughter I would think that she's normal in her development. I am glad that you've done this much research. I also want to tell you a little about my experience with my grandson so that you can use this free resource.
My grandson was still not talking clearly and still using just a few single words when he was nearly 3. His pediatrician suggested that his mother have him evaluated and gave her the phone numbers of a private professional as well at one for Multnomah County Intermediate School District Office. We learned that each county is mandated by law to evaluate and provide services to any baby/child who would have difficulty succeeding in school. IF the child is evaluated and found to benefit from services there are more intensive services available before the child is 3. It turned out that my grandson has speech apraxia and has been in speech therapy provided by the school district since he was evaluated.
One of my friends first suggested the possibility that my grandson was autistic. She worked in the school district providing services for autistic children. I dismissed her suggestion. I did feel some concern but I believed that he was not autistic and accepted her comments as showing her concern for me and my grandson. She didn't try to convince; just made the suggestion allowing me to ask her questions which I did.
It also turns out that he has learning disabilities most likely related to some degree of autism although he does not have classic symptoms. I was glad that my friend had made the suggestion that his was possible a couple of years before I became aware that autism was a part of his difficulties. Her suggestion gave me time to process the idea and to do research.
We think my grandson is also quite smart. As he became older I realized that he does quickly learn and knows as much as a kid his age but he isn't able to put what he knows together in a mature fashion. This is something that I couldn't see when he was younger. I think that a professional person knows how to look for signs that aren't obvious to the untrained person.
I suggest that you call the County Intermediate Education District and ask about an evaluation. They may say that your daughter does not have sensory processing issues or any form of autism. In which case you will be reassured that your own assessment is correct. And if, by chance, she does need some assistance you are getting that for her while she's the age to benefit the most from intervention. This is a win/win situation. You have nothing to lose.
When I was doing research I discovered that there are many disorders/learning disabilities and then many variation on those. I found it impossible and still do find it impossible to fully understand my grandson's difficulties. Lack of speech is obvious. He has other characteristics that are not obvious.
Two characteristics that I thought of as normal when he was two and that have become even more intense is his seeking strong touch. He runs pel mel when he greets someone. I have to brace myself so that I don't fall. I have repeated over and over for 2-3 years that he should slow down etc. He still runs and nearly knocks me over. When he was a toddler he'd run hard into walls and furniture. He'd bounce off and keep on running or sit down and cry. He couldn't seem to learn how to avoid solid objects.
The other thing is that he would stuff his mouth so full that he didn't have space to chew. He still does that too.
A sensory disorder can manifest itself either has needing strong touch in order to feel something or the opposite being sensitive to light touch.
Both of my grandchildren are strong willed and independant. As toddlers they had frequent temper tantrums. My granddaughter outgrew the tantrums. My grandson at 6 still has frequent tantrums. He has difficulty following directions. He can, when he chooses to, do one thing but we can't tell him to do 2 or 3 things at the same time. At 2 this was normal. At 6 it isn't.
On his own my grandson counts. He can start at 18 or go up in chronological order as well as starting at 1 but if you ask him to count to 10 he gives you a blank look. Same for the alphabet. He knows his numbers and the alphabet but he has difficulty using them.
My grandson is a delightful child. He is liked by adults and children. He is very social and fun to play with. He does have difficulty knowing how to interrelate at times. I'd guess his social skills are more at a 3 yo level. He's not a follower or a leader. He's often in his own world but not the silent withdrawn world that I'd associated with autism. He's active and searches out people with whom to interact.
I'm saying that recognizing autism, sensory processing disorders or any of the numerous ways of being in this world that handicap a child once they're in school is very complex. Have your daughter evaluated and set your mind at ease. You have nothing to lose and everything to gain.
I just read a comment about mercury. Mercury is no longer used in children's vaccinations. You can call the health department or your pediatrician to confirm that.
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D.L. answers from Seattle on November 02, 2009
I have actually been on the other side of this problem. I was worried about a close and dear friend's son for about a year before I approached her about it. They have autism in their family (dad's brother has it) and I was used to early signs due to a step-niece of mine with autism.
I was scared to death that she would be hurt and upset with me, or worse, stop being friends with me. We were pregnant together so it was even harder (for both of us) to see my daughter hit milestones consistently early while her son wasn't saying a word. It wasn't until my daughter's 2-year old appointment that I talked to our doctor to see what she thought and got advice on what their doctor should be doing. They live out of state and are on public health, so I was so worried they weren't getting the care they should. I finally had the conversation (as hard as it was) and made sure she knew that my worries all came from love. They had just had their 2 year appointment and their doctor also thought they needed testing. Two years later and their son still has major testing every few months and he's been diagnosed on the autism spectrum (along with other neurological problems). He's a great little guy, but because I was too scared to hurt my friend's feelings, nothing was started until age 2 (and it's key to get a diagnosis early). He's getting help, but he could definitely be further along than he is.
I really don't believe that your friend said this to be mean or hurt your feelings. The fact that she has been worried "for awhile now" tells me that she didn't want to jump to conclusions or hurt you and had probably been scared to say anything that would upset you. I'm not sure how the conversation went and maybe she could have approached the situation better, but honestly; I bet she has all the best intentions.
My first advice is to let go of the hurt and anger and have a calm conversation with your friend about why exactly she feels that way. Maybe she sees something you don't. She could be completely off base, but I really do believe she means well and I think hearing her out will help in the long run. I know for my friend, now that she has a two year old son too, she realizes just how much her older son wasn't doing. She had no comparison at the time. Take notes and try to keep in mind that she cares for you and your little girl.
Second, you're lucky... in 2 months your daughter will have her 2-year appointment, and you can take the time to really talk to her doctor about everything and see what they have to say. Maybe they'll want to start with the basic questionnaire, or maybe they'll see that nothing appears to be wrong. As a mom, you want the best for your child, and if she did need further testing, wouldn't you want to get the best care possible? The earlier kids with autism have help, the better.
Third, from the little bit you have written about your daughter, I don't see any tell-tell signs. Hopefully all is fine. :-) But you might come away with this with some great advice from either your friend and/or the doctor on how to help with your strong-willed kiddo. My daughter is beyond independent and came out that way. She's very strong-willed and her mood flips on a switch. She's amazingly smart and funny, but her mood swings and outbursts can be exhausting. I've gotten great advice from friends and her doctor along the way. And I've gotten advice that really hurt my feelings at the time. You are her mom, and you and your husband have decided on how you want to raise her. Take the advice that helps and you think will make a difference and don't use the advice you think doesn't fit your way of parenting. It's still your call. Personally, I have always brought up ANY concerns with my daughter's doctor and would rather know there was a problem than assume there isn't.
No one wants to hear there might be something wrong with their child. But it's better to be safe than sorry. I hope you feel better about the situation soon. I honestly don't think there's much to worry about and I hope you can bring yourself to talk to your friend. Good luck. :-)
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M.L. answers from Seattle on November 02, 2009
That sucks that your friend wasn't more sensitive to you and to what she was suggesting. That being said, I too have worked with people who are developmentally disabled and there are things you pick up on working with people that aren't on a chart. I don't think I know you or your child, but if she's suggesting it, it might be worth checking with your ped. Exceptional intellect can be an indicator of autism in itself.
I'm not saying that your friend was right to bring it up or the manner in which she did. You might just tell her that you appreciate her input and that you and the pediatrician will handle it from here. Or something like that. Tact isn't my strong suit either. :)
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J.N. answers from Seattle on November 02, 2009
K.,
You're actually lucky to have a friend that would care enough to tell you (even if the way it was told, wasn't the ideal).
It's so incredibly hard to hear that something might be wrong with our kids (I am no exception to that rule), but if someone who actually works with these kids has an incling that there is something to share, I would first ask why she felt that way and then probably schedule an appointment with my pediatrician.
It must have been hard for your friend to tell you since you said she had been thinking it for awhile.
Hugs ;)
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A.O. answers from Seattle on November 02, 2009
Hi There,
I'm sure this was very upsetting. Having never seen your daughter, I have no way to comment on whether she has signs/symptoms of autism, but I would like to comment on your friend.
I do have a 15 year old who is autistic. He was diagnosed at age 3. Back then, there wasn't a lot out there about autism. Take a step back for just a sec if you can (I know it will be hard) and look at it from a different perspective. I think it's wonderful that more people know about autism. Many many kids will be able to be helped early on with the recognition that is out there. I probably would have been offended if someone suggested to me that something seemed different about my son, but it might have gotten him help a little earlier too. I am NOT saying your daughter is different, but your friend, as long as she was nice about it, had enough courage and love to say something to you. Maybe you could ask her to elaborate on why she thinks this. Have her give you some specifics. You could thank her for her caring and tell her if you see more of this then you will bring it up to your pediatrician.
After my sons diagnosis, I suggested to 2 of my very good friends that they might want to have their kids evaluated for speech issues. One seemed offended, the other seems a little baffled. Both ended up in speech therapy. I don't regret saying anything to either of them and am glad in the end that it helped.
Just remember that the media has really put autism in the forefront and I'm sure your friend was just trying to be a good friend. Good Luck!
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B.R. answers from Seattle on November 02, 2009
i totally understand your frustration, i had people make similar comments about my son's tantrums. i also understand where your friend is coming from too. my sister in law and i both had our sons in december 2004, we always had play dates and spent alot of time together. eventually my son began crawling and walking and talking but his cousin didn't. at 20 months i became very concerned for my nephew as he didn't reach any of the developmental milestones at all and his speech seemed as if he could only speak through his nasal passages. he didnt look any different but the signs were clear to most people excluding my husband, his parents and my nephews parents. i was too worried about hurting anyone's feelings so i just kept my mouth shut.
when his 3rd b-day came around and he had just learned to walk his mother finally realized something wasn't right. he was diagnosed with asburgers and put in therapy.
if your daughter is autistic the doctor will notice the signs. The diagnosis does not mean the children are any less intelligent than their peers,in fact the I.Q of a child with asburgers is much higher than that of children without it. Albert Einstein was high functioning autistic along with many others. My nephew has now left my son in the dust! lol he was enrolled in pre-school at the age of 3,he began walking and talking almost emmediatly after enrollment. at the age of 4 he was reading and writting and is currently mastering the art of MULTIPLICATION!
that doesnt meen being told your friend suspects a disorder is any less offensive but, i just wanted to let you know that it isnt as bad as society makes it sound and there are many different forms of autism with many different symptoms and abilities. My nephew is amazingly smart he just learns differently than his cousin. it will be hard but i do think you should talk to your pediatrician, tell doc. what your freind said and what she does for work and tell him your opinion and the results of the assesments you've given. remember that she may be the next einstien, she just needs to be taught by a teacher qualified to teach her in a way that makes sense to her. in the event she is autistic the sooner she starts school the better chance she will have in adapting to life outside the home and be able to form freindships with other children(asbergers can make socializing difficult for some children) good luck and god bless. If you do take her to the doctor i'de be interested to know what the doctor says. you and your family will be in my prayers.
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J.B. answers from Anchorage on November 02, 2009
K.,
I understand how upsetting this can be for you. I am not sure how your friend brought up her concerns, obviously it wasn't done with tact and love, or else your reaction might have been different. I can speak from my experience that when I have had concerns for children that I associate with, it is very hard to know how to bring it up. My niece looked as though she was developmentally slow when she was younger, and I brought it up to my sister. We have an open relationship, so I felt I could discuss this with her. (I do have some background in dealing with special needs kids, but not a whole bunch). She ended up having her tested, and they said she was fine. But then she knew, so she didn't have to worry about it. I would say that you, as your daughter's mother, know her best and would be aware of problems she might have. Although, sometimes being so close, can also be hard too, because we sometimes need to take a step back. But having your husband and sister "evaluate" her was a good idea. I would take your findings to your friend and tell her you understand that she was doing this out of concern and love, but you have done some research and don't feel it is a concern. If you still felt upset, you can always bring it up with her pediatrician who is supposed to screen for those kinds of issues and see what he says.
On a slightly different aspect, if anyone ever does have any concerns, early intervention is the best way to address those issues. It gives everyone coping abilities and knowledge that they might not have had if they didn't assess. It is never easy to think our children might not be perfect, but it helps them out so much in the long run if we can take care of these things earlier, rather than later.
Good luck and may health and happiness find you and your family.
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