Official Autism Diagnosis and have questions

[momof3poohlovers]

My DS just turned 2 yesterday and a couple of weeks ago a Developmental Psychologist diagnosed him as High Risk for Autism. Because of his young age, they won't officially diagnose him until he is around 3 years old. He had already been "diagnosed" by a ped at the High Risk Infant Clinic and by a neurologist earlier in the year but the Early Intervention center for our county requires a child to be evaluated by their own psychologist for extra services so that is what this evaluation was for. A few of the tests they used were the ADOS Module I, Bayley III Scales of Infant Development, M-CHAT, clinical observations, and a CDI (Child development Inventory) filled out by me. According to the ADOS, his total was 16 (Autism cutoff is 12 and autism spectrum is 7) so he scored within the classic Autism range.

Here is my question to other parents out there. With a score of 16 on the ADOS, which sounds kind of high to me, what are the odds that this is something that he will "grow out of". I was told that they don't officially diagnose kids as young as my son because many times, they do outgrow many of the behaviors and end up being completely normal. He has a developmental teacher who comes out twice a week and was getting speech therapy (he is non-verbal) but we had to stop the speech due to a horrible therapist. Anyway, I guess I am just wondering if I should really push any therapy I can get for Autism for my son or should I see how the next year plays out and see if he does "outgrow" this. Am I just in denial that his diagnosis is accurate or is it a realistic hope that he will outgrow this? Any opinions?

 

[wdw4rfam]

My son was diagnosed at 3- non- verbal, and not reponding to therapists. I was told he would never speak. I dont believe that they just grow out of it- you have to keep trying things. Keep up the therapy!!! We tried everything from diet, to detoxing, etc. We also used the SON-Rise program. Something clicked, he started talking and now wont stop. He lost his sensory problems, and is now trying new foods. His diagnoses is now Aspergers- so not cured, but I am convinced you have to keep trying. I believe that different things work for different kids- but would say to do nothing and hope it goes away would not be good- just my opinion. Good luck.

 

[momof3poohlovers]

We are definitely planning on continuing therapy but I know if I want to push it, we would be able to get more hours based on his diagnosis. I am torn on how much therapy is too much. I also guess I was looking for a little hope that this is something that can be overcome. I think you may be right that it isn't something that is "outgrown" but something where these little ones are being reached somehow and make a breakthrough. Thanks for the advice! That is what I looking for, someone who has been through this.

 

[disneynp]

Where i live we get one hour every other week then evaluate for more time. you can get more speech through your insurance and some places take Medicaid so early intervention is its own thing and what i pay for is on me. i have a daughter who will turn three this month and i have been getting therapy for over a year now. i didn't get a diagnosis til earlier this year. my family was in denial but my mindset was and is that i rather stress and work like crazy to find it she is ok than to have done nothing and now its harder to even do basic things. so no don't give up find a me therapist and u can request one and having a diagnosis does help her for things being paid for. just so you know she is better some progress is better than no progress.

 

[bookwormde]

If you have requested an evaluation under IDEA part C the "child find" organization has to do the evaluation and cannot require you to have it done by your clinical team.
Second, lots of major medicinal centers who have Autism teams do formal evaluations as early as 6 months now.
I am not that familiar with ADOS 1 but ADOS 3 which is valid for 2 year old and up. Each component has its own threshold so you have to look at the score breakdown.
Early therapy is very important so do not let them put it off.

 

[lilpooh108]

Hi there! Our DD had sensory issues and began speech therapy last year (w/o success). I would encourage you to find a different therapist and to keep looking for different therapists until you find one that works well w/your child.

DD started OT therapy for different issues really young (at age 10 months) and we thought OT therapy would not work until we found a Godsend (literally) of a OT therapist who worked w/her until she was 2. I cried at my first meeting with her, watching her work successfully with my DD. I just knew we had found the right person since DD was responding to her.

Although your child and my child do not have the exact same problems, I just wanted to let you know as a parent who has gone through OT therapists, speech therapists and almost 2 years of OT therapy that therapy does help when you find someone that clicks w/your child. We've gone through a few who were simply awful (surprisingly at big name hospitals) and finally found someone who was amazing.

Good luck.

 

[Disneylvr]

My daughter was officially diagnosed with classic autism at the age of 33 months although it was suspected about a year before that. We got her into early intervention at the age of 2 which included speech and occupational therapy. Her diagnosis hasn't changed and she is still mostly non-verbal but overall she has made tremendous progress. Will she ever be able to live independently, no but my goal for her is to progress as much as she can and to simply be happy. My advice to you is get your son all the early interventions possible with the autism diagnosis. He is still very young and who know what kind of progress he may make and there are so many new interventions. And yes, he diagnosis could change as he gets older. Good luck to you and your family. It isn't an easy journey but you will have an opportunity to meet so many wonderful people who are there to help your son.

 

[momof3poohlovers]

If you have requested an evaluation under IDEA part C the "child find" organization has to do the evaluation and cannot require you to have it done by your clinical team.
Second, lots of major medicinal centers who have Autism teams do formal evaluations as early as 6 months now.
I am not that familiar with ADOS 1 but ADOS 3 which is valid for 2 year old and up. Each component has its own threshold so you have to look at the score breakdown.
Early therapy is very important so do not let them put it off.

What is IDEA part C? I was just curious as this is all new to me and I haven't heard of this.

He was already formally diagnosed in July by a team of doctors at our medical center (Loma Linda University) and by his Neurologist so that was taken care of 6 months ago but in order to qualify for extra therapy for Autism he had to be evaluated by the Early Intervention Psychologist as well. Because of his extreme Language delay, we starting receiving home therapy when he was about 16 months old where a therapist comes to our home and works on a little bit of everything for 3 hours a week. We were also receiving Speech therapy since Oct. after getting the Autism diagnosis by our doctors but the therapist we were seeing was terrible and after 2 1/2 months I decided I was done with her as my DS was getting nothing out of it but frustration. We are now waiting for the Early Intervention to approve a new Speech therapist. Unfortunately our insurance does not cover Speech and we do not qualify for Medicaid.

As far as ADOS 1, maybe it is the Autism test for babies younger than 2? Not sure as my son was 23 months when they tested him so just a couple of weeks shy of 2.

I do plan on continuing his therapy, I was just wondering if I was missing something other than Speech and the developmental therapy. This is all new to me so I am just trying to learn about the different therapies along the way. I am so glad I pushed for the therapy when he was just over a year old even before we had gotten a diagnosis. I knew for a while that something was wrong with my son. I guess my hope is that even if he is Autistic, maybe it will just be mild as already since he has started therapy, he has made tremendous improvements.

For those of you with Autistic kids, is there anything I should be asking for besides the speech and home therapy? How much does he need? Any other suggestions? Matthew is my fourth and last child and I want the to do the best I can for him.

 

[momof3poohlovers]

Hi there! Our DD had sensory issues and began speech therapy last year (w/o success). I would encourage you to find a different therapist and to keep looking for different therapists until you find one that works well w/your child.

Thanks for the advice! I completely agree with you about finding a therapist who will work well with your child. The therapist who comes to our house has a great bond with my son and works so well with him. She can get him to do so many things that he normally wouldn't do just because he likes her so much. His speech therapist, however, he absolutely hated. He cried every time he saw her and wouldn't do anything for her. He basically spent the whole hour twice a week crying. I thought he would get over it but after 2 1/2 months, I gave up even though he really needs the speech because he just wasn't getting anything out of it. It is amazing what a great therapist can accomplish!

 

[kirstenb1]

Our dd is now 6, and has been enrolled in private practice O/T for nearly 2 years. She started EI at 7 mths due to hypotonia. Then she wasn't talking, so continued on with speech therapy through EI til she was 3. She was dx'd at 20 mths with high functioning autism. She spent 3 yrs in special ed preschool, where she got speech, O/T and P/T.

I didn't understand fully what O/T was. Through the school, she received O/t, in terms of helping her grip a crayon, use scissors etc.

However, and I can't stress this enough, there is often a gap between the services the school offers (anything educationally necessary) vs. what a child needs to move forward as a person. The O/T she continues to receive in private practice addresses her sensory issues, balance issues, and gross and fine motor weaknesses. I wish I had enrolled her in O/T years ago!!! One example of a terrific milestone she hit last year was, initiating conversations with friends in her class. When she started O/t, she would rarely speak with anyone outside the family. If she did, it was in a whisper.

Each week in O/t, she is expected to try different swings, scooters, jumping into a ball pit, etc. As she masters each of these, it gives her confidence, and increases her motor planning skills (which have always been weak).

Anyway, get your child as much therapy as you can. If a therapy isn't working, then move on, but try everything, is my .02

 

[bookwormde]

Yes there are lot of poeple with Autism genetics who are very high functioning (most of the great inventive minds through history are based on autism genetics) so you will really wil not know what the future holds for a while and with proper understanding and support the challenges can be minimized and the amazing gifts that come along with the genentics can be developed.

IDEA is the federal law the governs education of chilren with disabilities. Part C is the part that support children before they enter school. Your local school district is required to evaluate and if a disability is determined provide needed educational supports.

 

[blondietink]

My son was diagnosed with Classic Autism prior to age 3. He did not speak, had food issues including food allergies, sensory problems, etc. We had him receiving speech, OT, PT and preschool classroom for 1/2 the day and he was in a normal day care setting the other 1/2 of the day. He did not speak until he was 7 years old.

He is now 19 years old. He never shuts his mouth, but most of his speech is echolalia, repeating commercials, jingles, what other people say. He has poor social skills. He has severe learning disabilities. He is a walking video camera and he can reproduce by drawing anything he has seen that interests him, such as movie credits, maps, cartoons, etc. He has a terrific sense of humor. He loves to travel. Will he ever be able to live alone? probably not. Will he be a rocket scientist? Absolutely not. Is he happy? Yes, he is! And that's all that really counts.

 

[momof3poohlovers]

He is now 19 years old. He never shuts his mouth, but most of his speech is echolalia, repeating commercials, jingles, what other people say. He has poor social skills. He has severe learning disabilities. He is a walking video camera and he can reproduce by drawing anything he has seen that interests him, such as movie credits, maps, cartoons, etc. He has a terrific sense of humor. He loves to travel. Will he ever be able to live alone? probably not. Will he be a rocket scientist? Absolutely not. Is he happy? Yes, he is! And that's all that really counts.

That is wonderful!

 

[kandb]

My ds started showing some behaviors of autism at around age 2. We brought him to 2 pediatric neurologists. One thought he was on the spectrum and that dr told us to "get us as much therapy as he could stand". We were living in NY state and thankfully they gave him alot of therapy. He had 4 hours a day of aba, special ed preschool that had half neuro-typical kids, speech and ot. He was a busy boy. He had an aide in kindergarden and 1st grade and a shared aide in 2nd grade. He is now in 2nd grade and the teacher said he does not need help of the aide anymore. He just gets pulled out for OT. He loves playing with other kids and is smart and a fantastic child. All the therapy we got him really payed off. We brought him to a developmental pediatrician recently for an evaluation and she said he had some "asperger behaviors" but did not diagnose him with anything. He is such a funny kid, who makes me laugh all the time. When we went to the dr when he was young, we told him to "please diagnose him so we can get the therapy he needs." I think it would be beneficial to do the same. All those records are closed, if that is what you are worried about. Good luck

 

[Booknut]

Our daughter started to 'regress' at around 15 months and the doctors weren't really interested in what we were telling them so we had to go to private doctors and therapists. We tried a lot of different things, diet, speech therapy, occupational therapy for sensory issues etc and then started a programme at home based on the Early Start Denver Model which is sort of a play based ABA programme.

Our daughter is doing very well at the moment but we had to trust our instincts because here (we live in the UK) they tend to sometimes have a 'let's wait and see' attitude which is really the worse thing you can do. Best to err on the side of caution. I'm glad we did because I dread to think where DD would be if we had listened to the doctors.

One book (of the dozens I read at first) which really helped me out was this one: http://www.amazon.com/Autism-Recove...9384/ref=sr_1_2?ie=UTF8&qid=1327393594&sr=8-2

It gave me lots of tips on how to organise activities and play with my daughter and help her to learn many skills she would need for pre-school. She is now attending a mainstream school and doing very well (she does have a 1:1 assistant for half the time to help keep her on task). Good luck

 

[Nik's Mom]

Our oldest started to regress at about 2 years old. He was bilingual spanish and english, but at 2, lost most of his vocabulary. We were given the run around and the doctor blamed it on my son being confused with 2 languages. Even though we tried to explain that he would "zone out", not respond to his name unless we were right in his face, etc. It took a long time and changing to a different pediatrician until we got a diagnosis.

My son started speech therapy at 4 years old. We lost precious time because a doctor wouldn't listen to us. And in the mean time, we had a 2nd son born with autism.

Wiith speech, ot, social groups, my sons have come a long way. The oldest can sit in on general ed classes. In fact, he tends to know more than the gen ed kids in science class. My youngest has his struggles, but continues to make improvements.

I don't know what lies ahead for my boys. But they are both very happy. We travel with them and expose them to a lot of different things. They lead very happy lives.

momof3poohlovers, there may be dark days ahead. There are days when I cry. But there are even more days when I laugh, or feel so blessed to have my boys.

 

[Canadamomof3]

My son was first assessed for autism at age 2, then finished official testing by age 3.5. Autism isn't really something a child grows out of - some kids do really well with the help of therapy and are able to function at a level similar to their peers in time. Early intervention is essential for autistic kids - many studies have shown that early intervention is essential and can lead to huge improvements. At age 3 my son was non verbal and was throwing dozens of tantrums per day - after 1 year of special ed preschool he was talking in sentences and his behaviour had drasticly improved. He did a total of 3 years of special ed school combined with some in home aide and therapy services and has made many remarkable strides. His autism is fairly typical (as in easy to daignose based on his symptoms) and he will still fall under the new criteria, but many people don't know he is autistic and he is able to function within a typical classroom with little assistance. I have learned many amazing things from my son - I think that the greatest gift that autistic kids give their parents is a profound appreciation for small milestones - things that typical kids may do easily can be much harder for autistic kids and seeing them climb mountains to achieve these goals is amazing. I bawled my eyes out the first time my son made eye contact - at the age of 3.

 

[Mom2six]

Our son was officially diagnosed with moderate/severe autism when he was 2 1/2 years old, but he had started early intervention services at 18 months old. He was non-verbal until just a few months ago and now he is talking a lot! He received speech therapy (including feeding therapy) and occupational therapy (OT) as well as play therapy. The therapy was really good for him and helped a lot - I would push for as much as you can get!

Honestly, I wouldn't count on your son outgrowing the problems and the diagnosis changing (though it could happen). However, with the right therapy and the work you do with your son, there is a good chance for huge improvement. I am so amazed by how much our son has grown over the past year and a half. He is almost four now. Do not give up hope, but know that your son can still have a happy life.

 

[momof3poohlovers]

Thank you for all of the replies, encouragement, and advice. In the 2 1/2 months since I posted this, my son has made so much progress! He is saying 3 words now and has made some progress with sensory issues and social issues. He still isn't playing with other kids but he is at least noticing them now and will smile at them. He is receiving home therapy, OT and ST. The home therapist seems to be making the most progress with him, probably because he is in a comfortable environment and has been seeing her for 10 months now. I'm amazed at how far he has come since turning 2. I'm not sure if it is the therapy or just maturity but I am excited!

 

[bookwormde]

Great to hear of the progress, early intervention and maximum supports are yielding amazing results. If you have time I would suggest you look into a program called "floor time". Many therapist use it, but more importantly contains techniques which are easily learned and practiced by parents.

Here is a link if you are interested

http://www.icdl.com/dirFloortime/overview/index.shtml