The Journey to Diagnosis

Carie - posted on 01/25/2009

Find a different doctor! You're going through enough right now to have to deal with that. A developmental pediatrician with an autistic unit diagnosed my daughter. You could also contact the Autism Society of America and ask if they can refer you to physicians in your area that specialize.

Lorelei - posted on 01/25/2009

My son (also named Matthew :) ) is 12 years old and entered Junior High this year. We have been dealing with the schools and doctors for the past 6 years and it seems very true that no one wants to label a child. At the age of 6, my son lacked social skills, was very literal, did not understand instructions, needed routine (would meltdown without), did not understand boundaries or inappropriate actions/behaviour, but did very well academically. The schools felt my son had Aspergers, but the psychiatrist said no, he is immature for his age and shows signs of ADHD. So we received no assistance from the schools as he did not "qualify" for funding. After a couple years it was evident to me that he did not match ADHD, but had traits more similar to Aspergers. Again, he was seen by a psychiatrist for a 1/2 hour appointment. Again, not labelling him, they advised that ADHD was the proper diagnosis. I was in the appointment with him and still can't figure that one out since he just sat there on the couch, but since they are the professionals, we figured they knew best, especially since this was the 2nd professional that said it was not Aspergers. My son was placed on meds to control his impulsiveness, but I saw no difference in his behaviour on the meds, even with trying a few different kinds. We eventually took him off the medications because with no pros to taking them and a lot of con's, it didn't make sense to me. We waited for him to mature and tried to teach him best we could on our own how to "act" in public. He is 12 now and has entered Junior High. This is a totally new world for him with a lot of new pressures. He is dealing but it is very hard for him. We are having him tested again. The doctor we are seeing now seems to understand that it's okay to label as without it there is no access to resources and support for the child or parents, and the schools seem to need that "label" in order to make allowances, provisions and provide services and support for him.



So I guess what I am saying is that the sooner a diagnosis, the better. If my son received the help he needed in the early years school, the transition to middle years would probably have been more successful and plus the support would been in place already. I hope everything goes well for you and your son. Just remember, you need to be his advocate! If you feel something is not right, say so. And never let someone tell you that you are a bad mother! I would love to put those types of people in our shoes, even just for a day. Good luck, and keep smiling. If you do, he will!!!



Lorelei in Alberta, Canada

Gemma - posted on 01/12/2009

I am sorry to here they have said that to you. You are far from being a bad parent, for wanting the best for your son. I would complain and ask for a new doctor. I am in the process of having my son tested but so far only the school are involved. Who is best to talk to, for a dianosis. I was told by the school that they won't normanly diagnose them, untill they are seven. But I feel that we should have more support to give our children the best start in life.

My son's school have been quite supportive. So when your son starts school, I would mention your concerns to them and they may be able help.

Sorry I can't be more help. Good luck for the future.

Gemma in Bournemouth. UK

Annmarie - posted on 01/10/2009

When my son was having difficulty, I was willing to go to the ends of the earth for a Dx. And that unfortunately is what it takes half the time. You need to find out who the BEST Neurologist is in your REGION. Usually Us News and World report will post a best Drs and Hospitals report. Call your nearest BEST hospital, ask for Pediatric Neurology, and tell them you want the best there is because you need an answer for your child. Usually if you explain your story they will give you a referral.

If you live in NYC there is a great one who has a 6 month waiting list and does NOT accept any insurance. I have gone through my insurance and gotten nothing. Unfortunately if you want an answer you might have to pay for it. But the up side is ONCE you have the DX from this person, it is the GOLD standard. NO ONE refutes it. If the Dr. says you need 20 hours of ABA, and 2 of speech and 1 of OT, chances are you get it with out a fight.

It is worth paying a Great Dr for the initial Dx. Because you will save thousand of dollars in the long run from not having to go to impartial hearing with the school district when your child is older.  The older the child gets the less services they are willing to give. If you Dx is rock solid it is harder for the school district to chip away at it..

Good Luck

Bekki - posted on 01/10/2009

its disgusting that moms are treated this way and have to resort to gathering evidence. i know because ive been there myself, i was accused of lying to get medication and one so called doctor stripped off my son in front of me and checked him for signs of sexual abuse! i got so low it was unbearable. what i did was i kept a record of EVERYTHING, any letters i got went in a folder, i wrote down everything that was said during appointments with doctors and therapists, i researched autism so i knew what i was talking about and enlisted the help of the nursery and then school teachers. just remember knowledge is power! i took all the folders and note books with me to every appointment so they knew i meant business.

you are not a bad parent at all, that theory went out a long long time ago! i wish you all the luck in the world coz i know what youre going through!

Kerry - posted on 01/09/2009

Thats a shame meridith that day care cannot handle the differences. Perhaps they have too many children there and its time to look around for another who can take the time and effort to understand your son.  In australia even the daycare has acess to funding for special needs children, and we are alloted extra hours of day care time.  The idea of that i think is to allow the same amount of subsidised care, that a working parent would use. Some hope of respite.

It was wonderful when my hardest to deal with child went to daycare, there were routines and a few simple and clear expectations, these rules he founf he could follow.  The director of the center was half way through child psycholgy and used my son as a model for some of her papers because his behaviours were so unique and were mistaken by many people for bad attitude. Get your guy into somwhere smaller with patient and understanding workers!

Even with the good care and help my son received as a little one, he had a hard time with big school, things kept changing, teacher had a sick day, it rained, there was flourescent light. many little things can upset their feeling of safety so its best to get him settled somewhere they are happy to allow for these type of issues, this can give you enough peace of mind while he is in care for the day, to work on what to do about his big school. And the school guidance people will listen to you as he gets a little older.  I called and made an appt for them to come out to my home to see me and my son, and asked them when i called to allow for extra time as there was issues for my son, which may take some time to explain.  Mention to them that if they visit your son in his own environment the first time they see him, they can compare that to when you have to visit them in a school environment, they will have a baseline to plot his reactions/behaviours on.

See if there is an autism specialist in your area, and take him for the long appointments.  There is at least an hour needed so the specialst can see what happens when the 'fuse' or the 'be good' time ends.  One of my 3 went to see Tony Attwood and at the begining of the visit tony thought she was a normal 3 yo. by the end of an hour, i spent that time asking questions of autistic behaviour, tony could see her change her attitude and behaviour past what could be considered normal.  It is the extreme that our guys take a behavour to that makes them autistic, so by the end of the visit my little girl was hanging upside down from the door, flapping her little arms and screetching that its time to go, time to go.  Tony then told me that yes i needed to keep an eye on her as she was definatly asperger syndrome, not classic autism like her big brother. 

A few more visits and seeing the paed and a child developmental team, confirmed this.  So with her still at a young age i was prepared and had some early intervention techniques ready to use. Whew she was not half the difficulty that i had with number one.  Being armed with information makes the difference.  Do what you can at home and leave the school battle for a later time. I did notice having had 3 kids on the spectrum, that the other children dont usually notice, or make fun of, or single the kids out until they are around 8 yo.  At that time instead of what our guys do being funny or clever, the other kids see it as strange.

Mary - posted on 01/08/2009

Stewart did those things, too. I would go through Child Find right now for your son. You need a better daycare. Make sure it's one that's not too overstimulating with too many things going on. Stewart was in home daycare and went to preschool but only for two and a half hours twice a week. If your daycare is a center there may be too many children in the room for your son to handle being around. My advice to you right now would be to focus your attention on his daycare rather than the school board. That can wait until he gets into pre-k if you have that in your school system or when he's in kindergarten.

Meredith - posted on 01/07/2009

Hi Mary! We live in Melbourne, FL. He exhibits most Asperger traits. Has no socialization with peers, sensory issues such as loud noises, clothing, food textures. He throws temper tantrums if we take a different route home after school or change any routine we have. He rocks a lot also.  The daycare he goes to cannot handle his "not listening" anymore. I have been dealing with the school board here for months trying to get an IEP setup and still nothing.

Mary - posted on 01/07/2009

I have a 15 year old son diagnosed with characteristics of Asperger's Syndrome. He is getting the help he needs in school due to his IEP. We live in Baltimore. Where are you? What does your son need help with because you don't have a diagnosis? Is it because you don't understand the behavior he exhibits? I was frustrated with not understanding why my son was not like others. He was first diagnosed with Obsessive Compulsive Disorder and anxiety when he was 6. That diagnosis was very helpful in understanding his needs and why he was acting the way he did. He will always face challenges and have difficulty handling things that other kids handle easily, but as his parent I am the one that best knows how to help him and you are, too. You will learn what to do and know what to do to help your child as you face things together. Keep that in mind. Even if you never get a formal diagnosis as Asperger's, there will be ways to help him in elementary school. Be proactive as a parent and you will get the help for him. Relax and enjoy your unique son!

Meredith - posted on 01/07/2009

I wanted to thank everyone for your support. I don't think we could make it through all this without all of the information and kind words from everyone.

Janet - posted on 01/07/2009

My son was diagnosed with autism @ age 2, and he is now 4 and doing well. The best advice I got from a fellow Mom of a child with autism is this: You know your child better than anyone. Don't stop searching until you find the right team of doctors, OTs, and speech therapists to care for him.  I'm outraged that a doctor told you you are a "bad parent"!  I urge you to find a better pediatrician. There are so many good ones out there.  You're doing the right thing for your son by not giving up until you find the right team to care for him.  Remember, You are not alone. You always have hope and faith.

Connie - posted on 01/07/2009

I am sorry to here about your ordeal, Our son was dx around the time he turned 5, his doctor had said she was noticing that he had some Autistic tendencies and said that we should have him tested, I waited some time before doing that though and now wish I had not because I could not believe what she was saying. He was enrolled in Head Start and they tested him and said that we should take him to Kansas City to the developmental screening department and so his PDD-NOS has come about although I do see a lot of Aspergers in him also so I would keep pushing your doctor or find a Pediatrician that will listen because you are the only one who really knows your child, so be the best advocate that you can because your son will need all the support you can give him and you will need all the support you can get from friends and family because it is a difficult road to be going down.

Francie - posted on 01/07/2009

As many times as I've seen advice telling parents to have a pediatrician evaluate their child, I cannot understand why anyone would go that route. Consider the environment and conditions under which a medical doctor normally sees your child - 10-15 minutes at a shot, looking for physical symptoms that they can quickly diagnose (temperature, rash, cough...) I don't think that most of them even know what to look for.

I was lucky - once I discovered that there actually WAS a condition that explained my son's behavior (I had never heard of Aspergers until he was 12 years old). I got him in to see a psychologist who specializes in Autism Spectrum concerns. He spoke with and evaluated my son over the course of 4 one-hour visits, then was confident in diagnosing him with Aspergers. From there, we went to the school and - in writing - requested an evaluation for an Individual Education Program (in the U.S. I believe it is the law that they have 30 work days to respond). The school turned out to be very helpful and had a team of about 15 specialists evaluate my son (everyone from an audiologist to a psychiatrist) and agreed with our psychologist. From there we worked together on an IEP that is helping my son to cope with school (organizational ability, writing, social etc.) It is a continuing battle but there is hope! I just wouldn't spend too much time trying to educate my child's physician.

Sarah - posted on 01/07/2009

I took both of my sons to our county's early intervention, one was diagnosed right away, the other is classified as borderline and will go back for a second evaluation when he is 2. The give you tons of information on the delays and obstacles they face and resources to get in touch with to get your child the help that they need with or without the diagnosis.

Karen - posted on 01/07/2009

I have had a simmilar experience. My doctor told me it was all in my head and that I had post partum depression. guess what I have a son who has Autism, It took three addition years for diagnosis but I was right and you know what , THEY DO NOT TEACH about AUTISM in MEDICAL SCHOOL, or at least they did not when my doctor went. Hang in there. But you should know I put all this effort in to getting him diagnosised that when I finaly got it it was like a Hollow victory cause then the realization hit and the waitlist and intervention nightmare began. It has been over a year now and the difference in him is remarkable. It is a long and lonley self deprecating jounrey but worth it in the end!

karenavita@hotmail.com if you want to discuss this further!

Monika - posted on 01/06/2009

We searched for years for answers for our kids, all four of my boys have Asperger's Syndrome, and I did not want mine labeled. I found out, like you, that sometimes a label is necessary so the school will listen to you. We did not get answers that seemed to feel right, you know what I mean, things just didn't "click" as dead-on for my kids. I ended up going to a developmental pediatrician at a teaching university. It was the best thing ever. We have to travel to this specialist twice a year, but she handles their meds (anti-anxiety, the only thing that has helped us actually GET to school) and gives great recommendations on how to deal with the school. Life is much better now that I know what is going on with my kids. I tried every parenting skill I heard about. In the end, the answers all lay with what the kids were dealing with. Now we start on the right page before we deal with the situation. I still do not allow bad behaviour from my kids, but now I have an idea as to what is really going on, and an idea as to what things will push more buttons, and which ones will actually teach the child in question about the behaviour. Good luck.





I think that the bottom line is that if things don't feel right to you, you are the mom, and your instincts are there for a reason. Don't forget that.





Keep pushing, keep searching, you are doing the right thing to keep on advocating for your child. It has only been a few years since the DSM even recognized Asperger's Syndrome, and now we have to remember that the schools are waaay behind that. They all still believe that each AS kid will look like the last, and that there is only one solution to help these kids. Most teachers aren't even trained to know what this is. We still have to push to have para-professionals in the gifted programs. We still have to fight to get the schools to give IEP's and 504 plans to these kids. (One school would only help my child if we labeled him "ED"--emotionally delayed--which he was, but the other kids in this little box were all kids with severe issues and were really, really bad examples. My kid didn't fit there, so we kept fighting and finally got him labeled "AS"-asperger's--only to have people think that meant he was like some guy on a tv show--urgh)





You are a great mom to keep looking for the right answer. Keep up the good fight.

Amanda - posted on 01/06/2009

I would also start with the school district - the earlier the better.  Just contact them and say your son seems to have some issues that you feel need to be addressed before he's in formal classes.  That's just one step, though.  If you don't get results with that, do your best not to get discouraged.  My son was diagnosed with Sensory Processing Disorder by an OT and she deals with Asperger's, autism, etc. all day, every day.  She had the names of other medical professionals who would take me seriously as well as the name of a school parent advocate. 

I wish you luck - it's a tough road that I'm still trying to climb myself.

Kerry - posted on 01/06/2009

Meredith it took a very long time for my son to be diagnosed and when he was finally sent to the head peadiatrician for the state, the paed looked at me and said yes he is autistic and adhd and is probably a 9 out of ten on both scales, I have been hearing about him for a lot of years.

so I asked the paed what i should have done with the child he said nothing you had done differently would have helped you did a fine job with no knowlege of what was happening, you are a good parent and it is not your fault if there is any problem. he then laffed and agreed when i asked him to give that to me in writing as i had been called everything from hysterical to imagining things to overprotective and being 'trained' by my son to do things his way a psych called it "mother training syndrome" hense my disbeleif in any value in psychiatrists and wanting 3 opinions from medical people. I had the gp, the local paed and the main paed for the state to back me up when i said there is something "not quite right" with my son.

dont let uneducated medical people put yu down while you feel there is something wrong, there probably is, keep seeing specialists till you hear something that DOES make sense.

From wht i have learned over time pdd's and aspergers are very similar and it could jsut be the way the diagnostic people have read the diagnosis manual, that makes their thoughts different.

look at http://www.mugsy.org/wendy/  she has information that is great and some of the diagnostic manual information.

Kerry - posted on 01/06/2009

there are no bad parents when ther is an autistic involved, we are all learning to deal with a very complex situation.

Kerry - posted on 01/06/2009

WOW Iam so surprised that with the prevalance of autism and the availablity of autism schools in the USA some of you guys are still being kept in the dark and treated as badly as those of us in australia who have a huge lack of resourses or programs.

ADHD is NOT a good enough diagnosis for schools (the ones here treated my first autistic as an adhd and wondered why their so called discipline did not work at all) and you need to take your records elizabeth and physically hurt that doc with them.  Find a autism centre near you and tell them the story I am sure it will be in hte media very quickly name and shame that fool.

Kelly - posted on 01/06/2009

hi iam appalled at what the doctor said we are going through the same process with our son whos six problems arose when he started nursery at two & half they picked up straight away he didnt give eye contact and his speech was very behind (he was our first so we hadnt picked it up) i contacted my health visitor but i found the education dept helped more the nursery got mark assesed through them then when he went school they have pushed for a diagnosis because they need him to have one to one to cope at school but still wer dont have a diagnosis 3 years on because they dont like to label children they say but that dosent help them when they need support does it is your son at a nursey could you not speak to them about his needs to see if the education dept could help. i hope you get help for your son and it turns out well for you

Elizabeth - posted on 01/05/2009

Oh, how horrible! Can we get that doc along with the one who diagnosed my son together and have a smack-fest? My sons doctor diagnosed him with Aspergers and it all clicked and made perfect sense. She refused to give me a written diagnosis because he was too young (he's 6) to 'label'. A few months later he began to have trouble in school and the school said they would not help him unless I filed the paperwork from the doctor. When I requested the write-up from the doctor, she claimed that my husband and I had done SUCH a great job in structuring our son and lessening his symptoms, that she CHANGED the diagnosis. Excuse me, but you don't get 'cured' from Aspergers. Now he's ADHD in her eyes, although--he's not. He focuses fine and is not hyper. AUGH!!!!!! So now I have to wait for tax returns to come thanks to our new insurance plan and take him to another doctor and have him re-diagnosed. Meanwhile, he suffers in school and they will adjust nothing. I'm infuriated! My son feels singled out and 'strange' and treated unfairly. I don't know what to tell him either.

Linda - posted on 01/05/2009

DID YOU GET HIM EVALUATED BY AN AUTISM CENTER..WHAT ABOUT THE DEPT OF HEALTH..YOU CN START THERE OR ASK YOUR SCHOOL DISTRICT..I WENT THROUGH A  FEW DRS MYSELF BEFORE MY SON GOT THE DIAGNOSIS OF PDD..

GOOD LUCK

Misty - posted on 01/05/2009

So sorry about what happened with your doctor. Unbelievable!
Have you checked into early intervention through your school district? They may be able to assess your son and see if he qualifies for services such as speech and occupational therapy, even if you don't have a diagnosis. Good luck!