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How long did everyones childs dx take?

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Old 02-03-2008, 12:42 PM   #1
Join Date: Nov 2006
Posts: 51
sarahponari HB User
How long did everyones childs dx take?

Im just asking this as we are going through a really lengthy process at the moment, with my youngest daughter who is 3 in May. When she was about 13 or 14 months old we first expressed our concerns for her, and since then she has had a 6 week block of speech therapy, and has seen a couple of different paeds. She went to the paed last time about 8 months ago and she sent her for an assessment. She has now for the past 3 weeks been going for ongoing assessments( they said they thought she needed these ongoing assessments to find out what was wrong and to see how they can help), but im just interested in how long each persons diagnosis has taken so i can see whether we wil be waiting much longer, as she is due tostart nursery school soon so we will need them to know about her.
I know every child with autism is different, and i know that the more severe it is the quicker the diagnosis is, as there is a girl who goes to the assessments at the same time and she has already been diagnosed, but this is because she has severe autism.
When we had the appointment 8 months ago, the paed said its very likely to be autism but she wanted to rule out anything else first, so she has had blood tests and everything which all came back ok, and at the moment on her files they have it written as significant speech and language delay, limited social interaction and other learing difficulties.
So how long did others diagnosis take?
Thanks for any help

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Old 02-03-2008, 01:51 PM   #2
Join Date: Aug 2006
Posts: 439
meechieny HB User
Re: How long did everyones childs dx take?

I don't know where you live, but in our area I think they are really hesitant on giving a diagnosis before the age of 4 unless the child is severly autistic. You will find that most schools base your child's therapy on the need and not the diagnosis, so it hasn't been a problem for us in the past. The only limitations we found not having one is when we wanted our child to be a part of a study and looking to get in a special program tailored for children with autism only. Good luck.

Old 02-03-2008, 05:42 PM   #3
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Join Date: Mar 2004
Posts: 536
datgrlstef HB User
Re: How long did everyones childs dx take?

I think I knew something was "off" by the time my son was 18 months.. definitely by the time he was two and still wasn't really speaking. (Although his dr just didn't see it). I pushed the pediatrician, who sent him for a hearing test, and then referred us to the state's Help Me Grow. He was diagnosed just after his 3rd birthday, just after his first year of special needs preschool started.

I think that it really varies not just by state, but even by family or who you deal with. I feel like despite the delay of just the pediatrician "not quite with the program", my son got into the county programs & diagnosed at a good age. Other parents I've seen at my son's OT have kids his age and are really frustrated that they're not getting the services they're asking for.. they're still not sure what's wrong with their child, and they can't seem to get their child seen by anybody who can tell them.

Old 02-03-2008, 06:12 PM   #4
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Join Date: Jan 2008
Location: FL, USA
Posts: 27
rebecca197334 HB User
Re: How long did everyones childs dx take?

My son just turned four. He is high functioning for autism, but he is the most unresponsive in the ESE class. I really hate the whole process. Because he has good eye contact and attempts to speek, they are reluctant to test him. I had to insist and the school Psy referred us to private help. I was steaming, but we finally got the ball rolling. Their first test for my son is the CARS test. Just to see if he makes the spectrum. I was so discouraged by all the lack interst in diagnosing my son. He is not making any progress in school or therapy. I think if we can find out why, we are 1 step closer to helping him. But I keep getting all this, "we treat the child" lingo from professional who are willing to let my son fall through the cracks because he is not severe. And we live in a "Leave no child behind" state. I wish i knew how long too. It feels like forever. Their is little sympathy where I live.

Old 02-04-2008, 03:09 PM   #5
Join Date: Feb 2008
Location: Gallatin, TN USA
Posts: 3
rachelTN HB User
Re: How long did everyones childs dx take?

We live north of nashville, TN. At about 9 months I could tell something was not right with my son. At his 1 year well check, I voiced my concerns to his ped. I was told everyone develops differently, and to give him time. Well, despite me raising concerns 4-5 more times, the dr didn't refer us for evaluation until he was 28 months old. We have a state agency here called TEIS (tennessee early intervention system), that children with delays can recieve treatment thru their 3rd birthday. I found out at that time, that we didn't need a dr referal for the evaluation. At 9 months old, he could have been evaluated, if the dr. would have just given me that information. At 30 months, my son was developmentally 15 months old. For those of you who have a hard time getting a diagnosis, my son doesn't have a diagnosis. The ST (speech therapist) he had thru TEIS said he would most likely be diagnosed as PDD- NOS. I have had no help from the medical community for getting help for him. I felt that if he got this diagnosis, that is all it was a diagnosis. it wouldn't help him get any more services. I have a friend who has a son with autism and her health ins. company has actually sued her home owners ins co. when her son fell off playground equipment. This was directly related to his diagnosis. whether or not that is legal I don't know. Also, he is uninsurable for life insurance. Apparently because an increase risk of self harm and suicide.

Old 02-04-2008, 03:16 PM   #6
Join Date: Feb 2008
Location: Gallatin, TN USA
Posts: 3
rachelTN HB User
Re: How long did everyones childs dx take?

TO: rebecca197334-

Check you local/ state autism society. There should be state laws that protect your child. In TN, each child needing special education is given an IEP ( individualized education plan)- this plan sets education goals for a specified period of time. so that the childs progress can be evaluated. There are also laws for legal course of action if you feel your child isn't getting the education that is needed.

Last edited by rachelTN; 02-04-2008 at 03:19 PM. Reason: addtional info

Old 02-04-2008, 03:53 PM   #7
Join Date: Feb 2008
Location: Gallatin, TN USA
Posts: 3
rachelTN HB User
Re: How long did everyones childs dx take?

Sorry to everyone- this is my first forum... so i have a lot to say!! My son entered the school system 01/07/07. He attended school 5 days a week from Jan- May- full days. june and july he attended half days mon- thur. In august, 8 months of treatment, he still had only minimal verbal communication. he mainly gestured and made a lot of sounds. This was minimal improvement over when he was introduced to TEIS 09/06. In july/ august, I started researching alternative treatments for autism and found several sites very helpful. Among them are: [url][/url], [url][/url], and [url]>>removed<<[/url].

Most of these deal with diet and supplements. I know this is a very contraversial topic, but i was willing to research anything. The first website I listed is good if your not familiar with any alternative treatments. It does a good job of explaining everything. What i chose for my son at that time was organic food. If I couldn't find it organic- I did natural. I was shocked with all the toxins they put in food as preservatives. many preservatives are neuro toxic as are pestacides. I have had to be creative because my son has a very limited list of foods he will eat. I also at that time gave him Methyl B12 1000mcg in the sublingual form daily. He also got a product called Mona Vie. it is 19 fruits ground up and bottled in liquid form. I gave him 1/2 oz in the morning and at night. Within 4 weeks he was speaking in sentences. He had never recognized my mother, brother, sister or her husband. They were over about 3 weeks after we started these treatments and he was calling them by name and speaking in sentences to them. He also had minimal episodes of spacing out or being in a fog. He has come a long way and is doing well. In November 07 we also started him on other supplements called Brainchild nutritionals. This has helped alot. B complex vitamins are very important with speech and neurological development. If you research B6 and B12 vitamin deficiency, you will find a lot of the symptoms of autism. My son had sensory intergration issues. Like getting syrup on his fingers, playing in sand, and eating different textured food. A B6 deficiency will lead to peripheral neuropathy- which is altered sensation in the hands/ fingers and feet/ toes.
My point is that how could I have expected him to pay attention in school and develop speech if his basic nutritional needs were not being met. He has made more progress in the last 6 months than he did in a year before we started the supplements and diet.

Last edited by moderator2; 02-04-2008 at 07:01 PM. Reason: disallowed website - please read our rules

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