New here, Confused re dignosis, 2yr 10month old non verbal

Rachael - posted on 02/21/2010 ( 23 moms have responded )

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Hi.
Im new here, My names rachael i have 3 children, My youngest son has some very severe delay's and "problems" (i hate that word but no idea how to describe) he had a diagnosis of global developmental delay. and language delay but i was certain it was much more than that my son has never said a word. he also acts like a baby or like he's in his own world most of the time and prefers to spin his toys, ie wheels, but if the toy doesnt have wheels on or anything he will actually spin the toy, if u stop him he becoms incredible upset. anyway after 2 yrs of fighting for someone to listen we finally had his Multi-disciplinary assesment, and i am so confused. this is what they have said.
education psycoligist (spelt wrong sry) said he needs to go a special assesment nursery where they will continue to asses him and begin pecs training with him,

The consultant said: He is 99% sure my son has autistic disorder (low functioning) his development is at 12months, his language development at 8 months (he doesnt even understand u and just babbles) and his physical development is better at 18 months but a significant delay
So having said all that he then went on to say that he wont dignose my son untill after his 3rd birthday (which is april) somethihng to do with a test which he cn only do on 3yr or older.
And that he would like to do bloodwork but then didnt elaborate as to why he wants to do the test i thought there ws no blood test for autism
Im frustrated we have to wait for a diagnosis an di dont see why im meeting mums who have children younger than 3 with a dx.

Thanks for reading
Rachael

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Christy - posted on 02/24/2010

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Hey Rachael, I know it is overwhelming, you have been at this for a long time. One word....hope. There are so many children who have recovered from autism. I have a 7 year old who has not recovered but has gone from not speaking a word to doing complete first grade work!!! There is hope!!! The Gluten free Casein free diet is your first step!! I know it may be another overwhelming thing to throw into your life but my son began talking the weekend we took out milk!! check out TACA at http://www.talkaboutcuringautism.org/ind...! Feel free to email me personally if you have any questions!! You have hope.... cjww228@msn.com

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Michelle - posted on 03/01/2010

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Thankyou so much you have said everything Keeles team of experts said last friday, when i was hearin them explaining it all i just heard the words my genes and got really upset luckily Chris (keeles dad) was with me and supported me. But you have made it so clear for make to absorb. Were very lucky to have such a specialised group of people who care about each individual case in Preston and each day we get happiness threw the fact that we know he is gettin the best care and the difference in little things like eye contact, Keele actually giving and recieving different items into his hands and returning them back to us if we say ta keele that was so satisfyin knowing everyday isnt a task its a new adventure in our lifes xx \thankyou once again xx

Sandra - posted on 03/01/2010

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It was extremely difficult to try to get a diagnosis for my child. There is no blood tewst for autism, however,the blood test could be to check for genetic disorders. My child is 8 and just recently was tested for genetic disorders. She is borderline autistic and also has a chromosonal disorder. I don't know how some people get a dx so early. It was like pulling teeth to even get Graces doctor to acknowledge there might be a problem even when it was clear there was. And like you I hate the word problem and also "normal". My child is normal for her!! I hope you get some answers soon, I know how frustrating and upsetting it can be. You just want to know what is wrong so you know how to proceed with best helping your child.

Ruth - posted on 03/01/2010

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okay, the way things work in the psychological world is actually just as restrictive as any other. The test they are speaking about is written and based upon the age of 3 as set milestones. It's really hard to get any idea of a child's development because all kids learn at a different pace, so while my eldest walked at 9 months, my second didn't walk till 14. Both are totally within the realms of "normal" development. The autism test that person was likely talking about is ADOS and is based on developmental milestones that generally occur in children by the age of three. If they are missing too many of those milestones, that is how they get the diagnosis.
As for the blood work, you are correct that there is no blood test for autism. It is likely that they are trying to rule out other possibilities before giving that diagnosis. As specifically what they are testing for and why before you allow any testing. you have a RIGHT to know what, why and the results and what they mean for your child.
Just because you have to wait for a diagnosis doesn't mean you can't start helping your child now. PECS is a good place to start. Most people think in pictures, not words, so reinforcing that and starting there with your communication is a good (and standard) way to start. Don't worry, it won't slow your child down or become a crutch. Also, you could try sign language as it is a multi-technique approach to learning: sound (if they can hear as you speak the word), sight (the sign and you can start with pictures in addition), and tactile (either feeling you move and/or moving themselves). try www.signingtime.com for a good quality product to start with.

because autism has become so much more commonplace, there are doctors who are willing to give diagnoses before age 3 if the symptoms are close enough. There is debate on whether that is a good practice as it opens a range of problems with health insurance costs and government over-involvement. Good luck to you. Start with what you can now and you will be heads above the rest when you can start getting services.

Tasha - posted on 03/01/2010

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I am new on this site, and it feels so good to see that I am ot alone. My son to is going to go to an ASD clinic for diagnosis. He is infatuated with moving parts as you said your son is. He is 5, when he didn't start cooing and babbling it worried me. The doctor said he was fine. Then when he started to have delays in other areas I would say something about it. Now after so long they are telling me he may have autism. He has horrible rages, his vocabulary is between 24-36 months. When he "rages" he cusses. hits, throws, kicks...ect...he seems to not understand personal space either he feels he can climb all over and kick whoever he wants. He also does this thing with his hands, it is hard to explain he doesn't flap them he puts them up to his mouth, face or stomach and his fingers are touching and he moves them really fast like he is super super excited, he does it when he sees something he likes a lot especially race cars = )...hope all goes well with your family, it is a long process and thanks to Dr.s not listening my son and I are just at the beginning.

Michelle - posted on 02/28/2010

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hi that sounds similar to what they were tellin me about keele (my son) last week

Michelle - posted on 02/28/2010

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My son is 2yr old yesterday actually and l;ast friday i got told he is 9 to 12 months in development. He has had bllod test but needs more cuz in transit one of them clotted. But at willows in preston they are really good team of specialist and they are now sending him for a mmr (brain scan) in next 8 weeks and while he is under anestectic there gonna re-do the blood test required, i am very happy with the quickness and intenseness of his diagnosis. Keele (my son) he is the most plasid child you could come across unless you try to take him out of his comfort zone, his eye contact 2 weeks ago was none exsistant but since he has been under willows specialiast team and one to one special needs education specialist sandra from portage has been coming for an hour a week, He now is lookin right at me and it is such a wonderful feeling. He is a content child like i said but he also can be very agressive and kicks out with arms and legs, he cant speak or walk and is the same size as my 3 year old, he is solid and very strong but also very loving and since willows have been involved in our lives he has come on leaps and bounds.

Michelle - posted on 02/28/2010

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Hi my son turned 2 yesterday, i am also new to this network as well as the world of autism. My son is development wise at the age of 9 to 12 months. He has had blood tests and 4 week intense assessment at willows in preston lancashire were i live. I was the one who so he was "different" compared to my other children. I went for a final report last friday and they told me that it could have something to do with one of his chr of which i would have gave him, its expanded or something they explained and are a really good team of specialist, keele loves to rock back and forth, he also sits there for ages spinning wheels and he is also into his familiar places, he does not like small areas and does not like to interact with other children, which can be hardwork considerin i have others but i hope that helps you a little xx

Kelly - posted on 02/28/2010

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my son has autisum with sever learning and behaver problems he is 6 now and was dianoes at 2yrs, he still dose not talk, just hang in there and no u dont need blood test.

Louise - posted on 02/27/2010

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Hi There, i have two sons and my oldest has PDD and my youngest has Autism so i know just how hard it can be, i found out about my youngest when i wanted to put my oldest sons into day care they are 4 and 3 now, so i put my youngest into day care with him, they both go to speech therapy two days a week and and we have just come back from getting blood work done on my youngest the test will take 6 months before we know any thing and its just tell us if its from my husbands side or my side and a heap of other things, it done sounds like your son has autism just like my youngest son, you just need to work with him, go get book with alot of pictures and sound them out to him picture cards, book that make a sound, repeat alot of things back to him.
Its a very long way but dont give up hope because my son we 18 months old when i found out and he is getting better but slowly speech therapy is great and day care was good for him to it also gives you a little time to your self, i dont know if i have helped but never stop asking questions good luck and i hope all it well...

Melissa - posted on 02/27/2010

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Rachael, a lot of people have responded with a lot of helpful information and advice! I just wanted to encourage you and to tell you that it's all going to be okay. (((hugs)))

As others have said, there is no bloodtest for autism, but they can test for other things that may help provide some answers to the mystery of your son's delays. It's a good thing that your doctor is waiting to do the autism screening until 3 years, so that he can have a chance to "catch-up" and also to rule other diagnoses out. My son was in a slightly different situation. At the age of two when he was only saying a few words and showing other "red flags" of autism, they didn't diagnose. Instead, they tried speech therapy (which helped immensely!) and waited it out until he could do the full (global) developmental assesment at 3. Since they are waiting with you, I hope they're at least referring you to a therapist who can start working on the physical and speech delays.

I know what you mean about being hesitiant to use the word "problems." I like to say "quirks," or "issues," because everyone has those! Your child is a little different, but that's okay! We're all different in some way. The most important thing is that you are paying attention and trying to get your child some help at such a young age. Don't give up, things will be hard, but they will get better.

Leisa - posted on 02/26/2010

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i don't know much about the testing side of things i am a step mum to a son who has asd and i have only been in his life for the last 2 yrs and he was diganoised b4 i came on the scene. One waqy we were able to understand what he wanted was threw signing a baby as young as 6 months can understand sign laguange and i think this might help it is only a suggestion to u and u can look online for the simplist of baby sign .
hopes this helps in some way

Amy - posted on 02/26/2010

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I have a son who is now 19 with significant cognitive impairment and Autistic range. I had the privilege of working with Children with Special Needs (My degree is in Early Child Development). Be encouraged. A diagnosis is important to obtain services available, but the label itself is not limiting! My son IS healing from Autism. Educate yourself on immunizations (pros and cons) Check out Jenny McCarthy. She has some great books/info as a Mom with an Autistic son who healed. Diet and Nutrition play a huge part! And fortunately children under 5 have the best window of advantage developmentally to improve!

Cindy - posted on 02/25/2010

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If your son is younger than 3 he is eligable for your states early learning or Birth to 3 program as we call it in SD. The state will pick up the cost for any necessary theripies needed and at age 3 the school district is leagally obligated to provide educationional and therapy services. He definately need intervention ASAP reguardless of what his diagnosis is. On paper, an ASD diagnosis is helpful but since most insurance companies won't cover treatment it is pretty useless. I would recommend ABA threapy since it worked well for all 3 of my children. Also, the earlier the intervention the better the outcome. I won't promise any miracles but the more time spent on language and social development at an early age the better the overall outcome.

Gina - posted on 02/25/2010

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There's not a blood test for Autism per se, but, as Renee hinted, for the fragile x syndrome. I have a friend who is a pediatrician :) came in very handy with my son. Most of the tests they have for the Autism spectrum in the USA can't truly detect it until 3 because there are many children who have a wide range of speech and social development times. But once they hit that age, certain milestones should be hit. I will say that according to your description, it seems that your son does fit the Autistic profile. Fortunately, his birthday comes in just a couple of months. Unfortunately, that can seem like forever and a day. Have you already made the appointment? If not, do it now. They often have long waiting lists.
Hugs and prayers!

Christy - posted on 02/24/2010

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Also Rachael, whatever the diagnosis you may be interested in info from Dr. Natasha Campbell-McBride...just goggle GAPS DIET. This book will help you understand what may be going on internally for your son!!!

Cheryl - posted on 02/24/2010

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sounds like i am reading about my own daughter. My daughter couldnt talk, had severe learning difficulties and needed speech therapy, she went to a speech and language unit and actually started to talk properly when she was 8 years old. Throughout her entire school years she struggled to cope and was excluded from school so many times because she couldnt get anyone to understand that she couldnt do the work given and so used to get really upset and then start to rant and rave at her teachers. My daughter is now 18yrs old and was only advised in september 2009 that she has semantic pragmatic disorder (autism) and also ADHD. Now to be told this when you are 18 comes as a severe blow and she is now seeing a psychologist every 2 weeks. It didnt matter how many times we reminded the school that she has always had these 'problems' they just didnt listen and now the hatred my daughter has of that school is unbelievable. As far as we are concerned the school let her down big time. They ignored us and treated my daughter has a 'naughty pupil'., of course she wasn't naughty she just struggled with lessons. I really hope you find out what is wrong with your son and that you are not left alone to deal with this. Please let me know how things go and good luck
:-) Cheryl

Rachael - posted on 02/24/2010

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huge thanks for your replies, it makes sence that he wants to check for anything else before diagnosing, and i suppose im gratefull for his viligence,

Sheila - posted on 02/22/2010

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Hi Rachel,

The blood work is probably for Fragile X syndrome; however, there is a rare diagnosis that is ruled out through a blood test. I don't remember the name, but it is a physical disorder that mimics autism. If detected early enough, it is treatable and symptons are reversed. It is VERY rare, so I don't want to give you false hope. If it is fragile X syndrome, it really doesn't change anything.

My son was diagnosed three months before turning four, however, I know children diagnosed at eighteen months. I am in Ontario, Canada.

Good luck, and keep posting. You will find support here.

Sheila

Melanie - posted on 02/22/2010

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In the UK they won't test my son until he's 3. We've been back and forwards trying to get some sort of diagnosis. He has to have his routine down to a T. We can't change it not even slightly. Our son also has Global Developmental delay. He understands a lot more than he can communicate. We started using baby sign language and it has helped us a great deal. Although he's 2 he has the mental age of a 12month old. It can be hard sometimes but i feel you have to keep pushing doctors to get anywhere. I'm sorry your having to wait so long. It's frustrating having to wait. We want to make sure our son has all the help he needs when he starts school next year but we are getting the run around too. He's seen by special needs team just not team that needs to assess his needs until july. Then they decide what help to give but it's a 6 month waiting list for help. Our only hope is that we get it in time for school next jan xx

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Your doctor is erring on the side of cautious watch and wait. He being 99% sure is not for sure. The blood tests can rule out other possible causes. I dont know where you are but here in Tn when the child reaches three he would be eligible for the school system to intervene with services. I prefer a proactive stance. You can always go find another doctor that takes this as seriously as you do.. Good Luck.

Kristina - posted on 02/21/2010

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We are getting blood work now too for our sons....it may be to find out if what is going on is genetic....just to rule it out before the doctor gives you the diagnosis. But you should ask them what they are going to test for. Good luck---but sorry boys are yelling :)

Renee - posted on 02/21/2010

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First it sounds like you are being given all sorts of complicated diagnosis, etc. And I am sorry for that. It does sound like your son is somewhere on the autism spectrum. And no I personally do not know of a test specifically targeted at 3 year olds. But I am not a doctor. My son was diagnosed at age 4 but the test was a general autism test not specific to his age so I don't know what they are talking about. I agree he needs the PECS and other speech therapy. It also sounds like he will benefit from occupational therapy as well. I don't know if you are in the US but they will do it as early as possible so that early intervention can take place and I'm sure you still have to fight to get it though. The blood work is not a test for autism, there is no blood test. Maybe they are looking for a chromasome abnormality, fragile x, etc. I would ask what the blood work is for. Good luck to you and keep asking questions!

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