How long did it take for your child to get diagnosed?

Robyn - posted on 02/16/2009

For me it has been a battle for many many years.. I knew something was off but when I brought it up with doctors they told me I was young and didnt know what I was talking about. So I just dealt with all the outbursts and frustration and extreme delay in social and emotional maturity. Finally a doctor said oh he has ADHD.. Then a school said I think you are right lets do some testing for special education.. but before that could go through he threatened to kill himself and was hospitalized. Then he was diagnosed as depressed and released on meds.. he tried to kill himself the next day (I started questioning at age 3 and got the ADHD dx at age 7 and the suicidal stuff age 9). So back in the hospital he went.. now a DX of Bipolar-Nos, GAD, ADHD and Asperger's. So load on medications.. I dont think it is Aspergers but maybe PDD-nos.. Have him evaluated and am told oh no he isnt on the spectrum at all because he has social seeking behaviors. So services are taken away.. Then he has a psychotic break due to stress.. Hospital adds Psychosis-Nos as a Dx.. I move back to CT to see better doctors.. Doctor here says I dont think he is Bipolar, Psychotic or anything like that.. I think all he has is PDD-nos. So he goes into a Partial Hospital Program for evaluation and to wean off all the meds. He is stable mood wise for 2 months now (he is 13 now) and slowly getting what he needs. I have been fighting and fighting and fighting for years now and only NOW after 10 years have I made any headway. Schools are still fighting me but I am making more headway.

Denise - posted on 02/16/2009

I have 4 children. My oldest was evaluated by early intervention when he was 18 months old because of speech delayments. A year and a half after starting speech theapy, We realized something else was "off". He was diagnosed PDD when he was around 3 yrs old not to mention sensory. At the sametime he was being diagnosed, I had twin daughters who were 9 months old. One of my twins was also diagnosed with PDD and Sensory. As of now, my sone is mainstreamed into kindergarden. My daughter still shows autistis symptoms like hand flapping,toe walking,speech,major melt downs and constantly hugging or hovering. Within the last year and a half, my other twin was evaluated because she is showing signs of ADHD. Now I have a 7 month old who is being evaluated sometime this week because she isn't rolling over (except in one direction), isn't holding a bottle,and isn't stilling up my herself. I am thankfull that I have a really good early intervention program that was able to address all of my kids needs early.

Jennifer - posted on 02/16/2009

Both myself and the family health visitor realised there was something not quite right with my son when he was around 18 months old but it took the various doctors who we dealt with until last September when he was 8 to get a final diagnsis, but still they think there could be something else as well so we are now waiting for results from genetic testing.

Latavia - posted on 02/16/2009

I noticed that something wasn't right with my son when he was almost 3. i had him evaluated and he started early intervention by the time he turned 3. He wasn't diagnosed with autism until he was 5. A pediatrician who specialized in autism came from another county to my son's school and diagnosed him. Where I am from, they were just coming of about this whole autism thing and his pediatrician didn't know anything. He kept telling me that my son would out grow it. The preschool where he went referred me to the specialist. My son is now 8 and is coming along very well.

Louisa - posted on 02/15/2009

My daughter was 18 month old when they diagnosed her with PDD. I was living in NY and my neighbor came by for a playdate. She happend to work with special needs children and noticed my daughter lining everything in the house up rather then playing with her toys. We never took any notice to it. We thought it was normal. Then she pointed out things I never noticed before such as how long it took her to try something new such as not walking until she was 16 months old. Then she pointed out how she never responds and we told her how we made an appointment that week to have her hearing checked. She told us that we should ask the doctor to refer us to someone who could evaluate her because these are all signs of a learning disabilities. So we had her checked by a specialist, then another for a second opinion, and then a neurologist and each time we never told them what the last doctor had told us and each time they all said the same thing. So by 19 months my daughter was placed in the early interventions program and is doing wonderful. She was even mainstreamed last year.

Marta - posted on 02/14/2009

My son was diagnosed when he was 3 years 4 months. I always thought my little man was quirky, he had a language delay and of course loved ceiling fans. We started speech and language therapy and a join a Toddler Talk group when he was 2 and half, and in that group the word autism was used. We didn't have a family doctor then because of a shortage in our area. We finally got one in Aug. and we were refered to a pediatrician and within a month we had an appt and Marten was diagnosed. Since then we have been put on the waiting list for IBI (ABA) and continue with OT, speech and lang therapy and he is now in a wonderful preschool program and is doing really well. Early intervention is the name of the game, and we have been very lucky that we have that kind of support in our area!!!

Veronica - posted on 02/05/2009

I knew something was not right with him after he turned a year old. It noticed that he did not answer to his name at 14 mo. in Nov. 2007. So we had his hearing tested. Hearing was perfect. His pediatrician suggested we had him evaluated in NY there is early intervention where there is public service and can have the child evaluated but I researched myself and found a facility since I heard early intervention took months due to the volume of parents where having them evaluated. We went to Albert Einstein College of Medicine and was evaluated by several doctors and pshycologist in Jan. 2008. All the doctors and psychologist came to the conclusion when he was 18 mo. that he was on the spectrum. Since he was diagnosed so early he is receiveing the help he needs and has improved in the past year.

Lyndsay - posted on 02/04/2009

I knew there was something wrong with my son when he was 2. The doctor sent him for an hearing test and speech thearpy he was 2 1/2 when he started talking. They didn't do anything else but i was still worried about his obessions and behavior. I managed to get an appointment with another doctor who said it was because he got fustrated because he was really intelligent. He's now 4 and started school last year in the first 6 weeks i had to go into school every other day. I decieded that this couldn't go on and its only now they are sending him to a specialist and they saying it could be aspergers.

Brenda - posted on 02/04/2009

I had no clue anything was "wrong" with my son.  I was 23 when I had him and he was my first child.  I was lucky enough to be able to spend the first 6 months of his life at home with him before going back to work.  He had done everything (rolling over, sitting up, crawling, etc.) within the normal range.  He learned his numbers, shapes, and colors around 2 and I thought he was ahead of the game, but he wasn't talking in sentences like the other kids his age.  But our doctor assured me that every child is different and will learn things at their own pace.  It wasn't until I switched daycares and at that time my son was 4.  The lady there noticed something was off after only a month or so.  He had tantrums in the morning when I dropped him off but I just thought it was separation anxiety.  I finally went to Gunderson Lutheran Clinic in LaCrosse, WI and had him seen by the Comprehensive Childcare Center.  After 3 days of testing the panel (educational specialist, psychiatrist, speech therapist, developmental pediatrician) told me that he had PDD-NOS.  So he was 2 months shy of being 6 when he was diagnosed.  I felt so stupid that I didn't know that anything was really wrong with him and for not getting him tested sooner.  It took another year to get on the waiting list for a waiver slot to begin therapy, which will start next week!!! 

Sarah - posted on 02/04/2009

My son just got diagnosed but the whole process took about 2 months. Mostly waiting for appointments..but once we were in, it was quick.

Carolyn - posted on 02/04/2009

We had our first inkling that ASD was possible at around 16 months... no dx until 25 months partly due to out rural location. I pushed really hard, however, as our daughter also had IS, which significantly increases the likelihood of ASD. In Canada, accessibility is sometimes an issue (wait lists). We then waited a further 4 months to get a spot for ABA.

Anthea - posted on 02/04/2009

i did and would do it all again , the hard work howerselves ,

always foning the clinic , or centre , and not giving up ,

u no your child better than anyone esle , so don,t give up ,

1 day there is lite at the end of the tunnel

Chratiana - posted on 02/03/2009

x

Bobbie - posted on 02/03/2009

my son has Pdd/nos he is 7 his name is shane and it took me about a year to get that diagnosis but i aways knew he was not like other boys.I THINK MOST MOMS KNOW BEFORE THE DOCTOR THAT SOMETHING MAY BE WRONG

Melony - posted on 02/03/2009

I basicly gave up on the pediatricians and called the University hospital myself.  I asked for my son to be seen at the Autism Clinic.  It took awhile to get him in, but we had the diagnosis that day.  My family was pretty sure he was autistic when he was just little, but getting the right doctors made a world of difference.

Meredith - posted on 02/03/2009

My son is 3 1/2 and we have been going through the process for about a year. Still no diagnosis. One psychologist suggested ADHD/ODD with Sensory and Language Processing Disorders. She couldn't explain the rocking thay he does constantly, (except of course he didn't do it in front of her.) I hear it is a long journey and I hope we get to the end soon so our children can get what they need.

Melony - posted on 02/03/2009

From the beginning to the diagnosis.....5 years!

Suzanne - posted on 02/03/2009

We did not get a diagnosis of Aspergers until my son was 10yrs old. He had been diagnosed with ADHD at 6yrs old and the doctor never looked further, but we knew something was "off". It wasn't until we changed doctors that we found out what was going on. Then the schools wouldn"t do any testing so we took him on our own. Then we still couldn't get an IEP but did get him a 504 ,which a lot of times is not worth the paper it is printed on. It is a struggle each year but worth it for him to get the most out of his education.

Anthea - posted on 02/03/2009

it also depends on what part of the uk you are , and what other help u have to be diganoised ect

Leanne - posted on 02/03/2009

There are more and more children becoming diagnosed with ASD in the UK alot more nowerdays. My son got diagnosed just a week ago hes 7 years old and they say they cant make a diagnosis usually until they are over the age of 5. It took from me realising my son wasnt right from the age of 12 months old till now to get a diagnosis after been on a waiting list for 2 years just to be assessed then 2 weeks for the feedback.

Gwen - posted on 02/03/2009

Sorry to ask, but why does it take so long?  I know some people say that in the UK there is not much awareness.

Kim - posted on 02/03/2009

7 years for my son

Anthea - posted on 02/03/2009

2 yeaRS , WITH HELP FROM SCHOOPL , AND OTHER GROUPS ECT

Gwen - posted on 02/03/2009

Thanks for your replies.  I had my son when I was 22 years old. During that time I didn't have any friends with children or knew other people with children.  So, I didn't have anybody to compare.  I saw a change when he was 2.  Around that time,  I had decided to go back to school full-time.  He spoke small sentences before, all of the sudden only 1 word sentencesb.  My first thought was that he was home sick.  Another difference I saw  was when he started pre-k at almost 4.  He one of the youngest kids in his class.  The other kids where 1year to 6 months older.  His teacher mentioned that I should think about having speech therapy and also to have his hearing checked.  I don't think she wanted to alarm me by telling me what she though he might have.  She was very careful wordoding what she was saying.  And that's where the process started.  After 2 months of started preschool he was accepted in the public school's preschool program.  I waited 1 more month to finish the month of his old school.  After all, I had already paid for that month. The transition to a new school was amazing.

Kathleen - posted on 02/02/2009

I new some thing was wrong when my daughter was 2,because one minute she could say a word and the next day she couldn't.they just said she had speech and developemental delays.when she was 5 yrs old her teachers thought she was autistic so took her to doctors again to be tested they said she was too lovable to be autistic.then when she was 15 years old the school insisted I have her tested again because they wouldn't help her any more without a specific diagnosis.the doctors finally admitted that I was right all along and she was a high functioning autistic.so my point is sometimes they don't want to give you a specific diagnosis they would rather lump it into a general catagory.

Carla - posted on 02/02/2009

About six months.  His preschool teacher suggested we have him evaluated.  We went through several channels before ending up in the psychologist's office with a diagnosis.  It started as an ADHD diagnosis but later PDD-NOS  was added.  I took him to another facility for a second opinion to have it confirmed. He has been on medication now for two years and we put him on a gluten free diet.  We are all handling it much better now.

MaryAnn - posted on 02/02/2009

My son was in preschool and his teachers actually tipped me off that something wasn't right. He was my first, so I had no clue... We took him to be evaluated through the county school system and they diagnosed him with Sensory Processing Disorder and said he had some social delays. As I started reading up on SPD, I kept coming across info on ASD and was convinced my son had Asperger's. On the recommendation of a friend who has a son with PDD-NOS, we took him to the local children's developmental center for further testing. It took us 2 months just to get in, but we did, and he was officially diagnosed PDD-NOS and :"borderline" Asperger's. I am happy to say he has improved SO much over the past few years (he is almost 8 now, diagnosed at 4 1/2) and was declassified from the special ed system at school last year. He does still have some definite indicators of ASD (obsessiveness with a particular subject, easily distracted/lack of focus, some social awkwardness, etc.) but he has made a lot of friends and has come a long way socially and in regards to his sensory issues (though they aren't completely gone). All in all, I would say it took about 3 months from his first evaluation to the actual diagnoses from the developmental center...).