Could it be autism? Or not?

Becca - posted on 07/22/2011 ( 8 moms have responded )

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Hi I'm new to this forum and really need to talk to others with similar circumstances.

I have a 41/2 year old boy named Charlie. We are currently trying to get an official doctors diagnosis to find out if he is on the spectrum. We waited 6 months for his initial evaluation and it was inconclusive. Now we are waiting 3 more months for further evaluations before we can get a diagnosis. In the mean time the local school system evaluated and tested him (in a months time) and they have concluded that he is autistic. Charlie has been receiving speech therapy since 26 months. He does not fit all the criteria for Autism...so we are thinking either he does not have it or he is PDD-NOS. Ugh it is just so frustrating! The autistic characteristics that he displays are...delayed speech, echolalia, amazing memory, light and sound sensitivity. On the other hand he is overly social, outgoing and enthusiastic about everything! He is very loving and enjoys cuddling and has eye contact. Charlie also displays a special talent...he can hear a song once and then perform it. He has an obsession with top 40 pop music. He loves Lady Gaga, Rhianna, Kesha, Brittney, etc. He sings, claps, stomps & drums the songs all the time! He wants to be on stage and perform more than anything! Look up CharlieStomp (one word) on YouTube, to see him in action. Anyway, I was wondering if there are any other moms out there that have children with similar characteristics? Six months ago it never occurred to me my son might be autistic...I just want to know now so he can receive help without any further delay.

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Beth - posted on 04/09/2012

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I know this is not what you want to hear because as moms we want to find out what the problem is soi so we can fix it but with autism the diagnosis very frequently changes or actually goes away. My daughter was diagnosed with autism when she was 18 months old and it was literally the most devastating thing. At first I was non functional but very quickly I got my self together and realized that whatever it was I needed to be fully capable of fighting and so I got really educated and decided to get her ABA therapy which at the time was still kind of new. She had round the clock therapy every day. Very grueling, because she wasn't speaking , or pointing or anything. One day she spoke a mumble and from there slowly she began to get better and now she is fine. No autism at all. My advice to you is get as much ABA therapy as possible and if you can afford to get private therapy that is good too. Also, don't worry about labels and diagnosis and stuff like that because thats really not important. Just get your child the help and try and have faith that lots of kids are diagnosed with autism when they aren't because before the age of 3 at least in NY there is only one diagnosis that can be given to a child in early intervention but when they reach kindergarten there are 13 different diagnosis which are usually more accurate. For instance my daughter is now ADD and when she was 18 months I was told she was fully autistic and would probably be that way but she is so fine you would really just get so much encouragement if you saw her. Does she have her days of being a bit "off" and not totally socially perfect? Yes, but coming from where she came, I am so grateful for where she is today, a beautiful, funny, so smart, quirky talkative little 6 year old.

Rhiannon - posted on 08/01/2011

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Hi Becca! My 5 year old is autistic and I know how much you don't want that diagnosis for your child. I'm not a doctor, but since we've had our diagnosis, I've spent a lot of time on forums and talking to other parents with children on the spectrum. What I've learned is that every autistic child is different, not only the severity they experience, but also the symptoms they present with. They say Autism is a spectrum; imagine a huge spectrum of symptoms commonly caused by or associated with ASD. Every child will have their own mixed bag from this spectrum, but no one child will have every symptom. I even met a child who had no speech delay at all, was actually verbose. Imagine the suffering his mother went through to get a diagnosis. He had so many of the other symptoms that eventually his doctors had to admit that he was autistic. Also, it's very easy for young children to be social; it won't be until he's older that you'll start to see kids avoiding him because he acts "weird". My son can play very well with a group, but often we'll find him sitting off by himself while everybody else plays. That's what makes him different. Just remember, it won't hurt your child to receive autistic services even if it turns out he's not autistic. It might even give him a leg up on his peers.

Rachelle - posted on 07/31/2011

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Hi,My son tyler has some of the same things you have said.Tyler is social with other kids but his speech keeps other kids from talking to him,He is 8 years old and has been in speech for 5 years he has slowly progressed.We have not got him a waiting list to get tested but they cant get him in for another year ehere we live.But we went to this place called THOUCH POINT.They tested him and told us that he had autisim spectrim but they are not doctors,There program has been very helpful so far they come to your home and teach you how to work with your child and it all fits around what your child is like.Each child is different and I love the fact they see that.They also have programs for you to join.If it is in your area I hope you check it out it can give you some answers and they will help your journey for what is best for your child.

Becca - posted on 07/31/2011

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Thanks all for your responses, it's very helpful hearing from other people who are going through similar situations. I have been thinking and what ever the label they give my boy Charlie still does not change who he is. He is so entertaining and such a delight to be around. We embrace his differences right now. I just worry about his future and what will happen once he is surrounded by other children his age...

Lori - posted on 07/31/2011

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No 2 children with Autism are completely alike, there are similarities and some common characteristics but always remember no 2 are the same. My son was diagnosed at age 2 and he is 4 now. No matter what the diagnosis was/is, I just did what I needed to do to get him every possible therapy necessary to improve his functions and learning and get on a good path to be mainstreamed into kindergarten/first grade when the time comes. I've often said they could call my son anything they wanted to as long as he received services. Take each day for the blessing and challenge it is with him, get him all the services you can (PT, OT, ST, Special Instruction) and live your life.

Good luck.

Cheri - posted on 07/28/2011

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Becca - Your son Charlie sounds a lot like my son Mason. His speech was delayed and now it is strictly echolalic. He has multiple repetitive behaviors and he perseverates on a long list of things. He has multiple sensory issues as well. Mason is somewhat social although in most instances it is inappropriate and he has limited eye contact. He is very affectionate with my husband and I and his various therapists and teachers. I had to laugh when I saw what you wrote about Charlie hearing a song once and then performing it because Mason is very similar. He can hear a song once and then the next time it is on he sings along, word for word!! It amazes my husband and I every time :) Anyway, Mason was diagnosed with PDD-NOS when he was 3 1/2. He didn't fit all the criteria for autism either although PDD-NOS is still on the spectrum.

I hope for your sake the doctors can come to a decision soon. The process of seeking a diagnosis is hard enough. Dealing with the confusion of not knowing whether or not he is on the spectrum just adds to that. If you ever need to talk, please feel free to message me.

Kim - posted on 07/28/2011

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hi i have a daughter who was diagnosed with autism at 2yrs 9 mnths,your son could be one of the higher functions of autism.the echolalia and light and sound sensitivity are some signs of autism as my daughter is the same.they are very intellegent children too.hope its a help to you.

Adrienne - posted on 07/23/2011

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Hi Becca. I wouldn't presume to offer a diagnosis but I have a child - David - who is somewhat similar and who has received a diagnosis of ASD from the Washington DC school system evaluation and this was later confirmed by a pediatrician. My son is almost four and a year ago I would have been stunned by the diagnosis. Like your Charlie he is loving, cuddly, happy, enthusiastic and outgoing in most circumstances. His speech seem to develop normally too. But he also has some ASD qualities - poor receptive speech skills, echolalia and repetitive play. For me the signs have been very confusing.
The lesson I am learning is that ASD children often have complex mixtures of qualities.

Maybe the thing to do would be to forget the label until you can get the diagnosis and in the meantime just work on his weaknesses.

Hope this helps. Charlie sounds adorable. I hope you get answers soon.

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