PDD Diagnosis what next?

[cogero]

WE just received a PDD diagnosis yesterday for our 22 month old. I am waiting to here from our EI Service Coordinator.

I just printed the First 100 Days from the Autism Speaks Website but would love to hear from actual parents or caregivers about what I need to know and some guidance.

This all started with a speech delay.

TIA

 

[bookwormde]

If all you received was a PDD-nos diagnosis it is little better than a “place holder” which will make your child eligible for services.

Hopefully the evaluations identified specific areas (beyond the communicative area), which characterized themselves as “on the spectrum” and include concrete information as to how they manifested and their impact on your child with your child and full and implementable recommendations for how to proceed both clinically and educationally.

If your child did not get a full autism spectrum evaluation then finding highly qualified clinicians to perform this is the next step.

If your child has some verbal communication capabilities and they are continuing to progress that is obviously an area for heightened attention and therapy. Beyond that it is a matter of identifying and addressing any other pieces of the Austism genetic puzzle that may exist and getting appropriate recommendations and supports in place.

If your child primarily manifests with verbal delays and is still “making progress” there is a reasonable likelihood that a HFA/Aserpgers diagnosis is where you will eventually end up, although there are other situation where the delay is not Autism related or the characteristics are limited to a small number and a formal diagnosis is not appropriate, only time, your becoming educated about Autism genetics, and finding highly qualified clinicians in this area will fill in the story. If the above fits your perception of your child then I always recommend as a first read Tony Attwoods’s book “The complete guide to Aspergers” C2007 available on Amazon for about $25. While titled about the Aspergers end of the spectrum it has great application to the middle of the spectrum also. It will provide good information about other characteristics and their impacts and how to monitor for them without placing unwarranted preconceptions and limitations of your child’s potential.

While Autism Speaks has some good links, there antiquated perception of Autism as a disease to be “cured” does not serve parents well in understanding the genetic basis of Autism and misdirects efforts. I would start with the Autism Society and the ApsenNJ sites.

Welcome to our active Autism community on this board, please feel free to ask any and as many specific question as you like there are lots of parents who have been where you are now and are a wealth of practical knowledge and experience

bookwormde

 

[cogero]

Thanks for your response.

I haven't received any of the evaluations yet.

We were seen by a Special Teacher, a speech Therapist, an OT, a PT and a psychologist. They all diagnosed him with delays. I am not sure how severe the delays will be or if they will be higher because all but the PT saw my son in the afternoon right before nap time or I had to wake him up for nap time.

I am going to check out those sites you gave me. I can see the potential for high functioning at some point but right now he is just 22 months actually today so I am sure as he grows it will be better at least I think so. I just need to get some information before the meeting with early intervention here in NYC so I am informed.

I am sure I will be posting a lot in the coming days.

 

[KirstenB]

I was in your shoes, nearly 2 1/2 years ago. I can remember it like it was yesterday. Is your son verbal? Does he do sign language? I recommend Stanley Greenspan's books on Floortime. They helped us enormously. He teaches ways, verbal and non-verbal to maintain interaction and communication iwth your child.

Our daughter Zoe was dx'd at 21 mths. We were signing with her at the time, as she had no words. She liked the Signing Time and Baby Bumblebee videos. At the time she was receiving speech therapy through Early Intervention. Our kids are eligible for special ed preschool as young as 2 years old. If I were to give you one piece of advice, I'd look into preschool as soon as he hits 2.

I really thought Zoe was not prepared for preschool, and her speech therapist agreed. She had zero attention span, wouldn't answer to her own name, had huge sensory issues, etc, plus gross motor weakness, poor motor planning.

In hindsight, I should have sent her at 2 1/2. She's in her second year of preschool, and the changes have been amazing. All the kids in the class have special needs, but not all have autism. They also intermix with "normal" kids for much of the day, so they're exposed to good examples for speech, socialization, etc. She is now extremely verbal, is learning to share with classmates, wait her turn, as well as learning traditional skills like counting, colors, etc.

I noticed the families who send their kids in at 2 will sometimes only go 3 days a week, or only mornings, so there is flexibility, which I hadn't considered at the time.

You have a lot to think about, and I hope you'll feel good about coming here . If I can be of any help, please let me know.

 

[KirstenB]

Cogero, I just looked at your family, at the bottom of your post. You have a huge leg up on all of this---your older child. You wouldn't believe how much our kids will do pretty much anything their older sibling tells them to!!! Our older dd Andi has done more for Zoe than anyone else. She used to help out during Zoe's therapy sessions, both PT and speech. Now she just is a terrific model for language, socialization, etc.

 

[jodifla]

WE just received a PDD diagnosis yesterday for our 22 month old. I am waiting to here from our EI Service Coordinator.

I just printed the First 100 Days from the Autism Speaks Website but would love to hear from actual parents or caregivers about what I need to know and some guidance.

This all started with a speech delay.

TIA

Your child is very young to get a PDD-NOS Dx. The specialists we work with tell us there isn't good science yet to accurately Dx someone so young. They won't Dx someone that young with PDD-NOS.

If you are going through EI, just know that the quality of the diagnosis through them varies wildly district by district, state by state. Some diagnosers know what they are doing, and others do not.

I have a son with severe Mixed Receptive Expressive Language disorder. To the uniformed (i.e., many, many school districts) it can look like autism. It's actually a differential diagnosis that needs unique treatments.

If I were you, I'd take the therapy I felt my child needed and not get very hung up on the label yet, unless I personally felt it was the right fit. As a PP said, Greenspan is great. Read his book THe Child With Special Needs. Lots of good info there. For speech help at home, Dr. Jim McDonald is great. You can find his tips on the web.

I'm on a late talkers message board with about 3,000 other parents, most of whom feel -- or have confirmation of ---a child have been misdiagnosed with autism.

 

[cogero]

thanks a lot everyone. I am waiting on all the written evals so I can see what they say. I am just trying to find some answers and direction at this point.

 

[A and J's Mom]

Our jouney started with concerns over speech delay as well. My son was diagnosed just after his second birthday. At that age it is just hard to say what functioning level kids will be at. Since you are just getting started, my recommendation is to check into your local Autism Society group. Ask if there is someone you can speak to about what is available in your area for various therapies. When DS was first diagnosed, I had his name on every waiting list from floortime to ABA as a placeholder until we figured out what direction to go. Going to Verbal Behavior ABA has helped him immensely. Also, check into your state's department of human services. See what medicaid waivers might apply (this is where disability, not income determines eligibility for medicaid). Medicaid has been better than our private insurance in paying for speech, OT, etc. My son receives medicaid and waiver services (such as respite) that helps a lot. Sorry, I'm rambling here. Let me know if you have any specific questions... I'd be happy to help sort some of this out with you.

In the next few months, make an extra effort to connect with your husband. Everyone reacts to this news in a different way, and that is okay. There will be times when you are at different phases in accepting that your family life isn't what you always thought it would be. Just keep talking to each other.

 

[cogero]

A little update. We finally received all our evaluations and had our IFSP meeting with the NYC EI program.

DS's diagnosis right now is PPD-NOS, Speech Delay and Gross Motor Skills Delay.

All disciplines found him delayed and Speech being the most severe.

We received the following services

10 hours a week of ABA therapy
4 (30 minute) sessions of Speech
3 (30 minute ) sessions of OT
1 (30 minute) session of PT

The speech therapist already called and has been scheduled for next week. Waiting to here from ABA, OT & PT. I need to follow up to see if my Service coordinator received the RX from my ped for OT & PT

I ordered the Tony Atwood book and am reading some book that was given to us by our service coordinator. I am still very overwelmed with all I am learning but I envision it will get easier to get a handle on as time goes on.

It is funny because I have noticed James doing new things the past few weeks like coming and taking my hand and walking along with me. Last night he climbed in my lap and we watched TV for 10 minutes together him sitting still is something that almost never happens.

I do have a question what exactly is done at ABA therapy I know that it is to help him focus but I am unsure of what exactly they will be doing.

 

[Princess Disney Mom]

I second to check out Stanley Greenspans books on floortime. My daughter now 15 was fortunate to have seen him several times a year from the time she was 2 and saw his whole team. Floortime has helped her to think creatively and be spontanous.

Good luck. Enjoy your child.

 

[jodifla]

A little update. We finally received all our evaluations and had our IFSP meeting with the NYC EI program.

DS's diagnosis right now is PPD-NOS, Speech Delay and Gross Motor Skills Delay.

All disciplines found him delayed and Speech being the most severe.

We received the following services

10 hours a week of ABA therapy
4 (30 minute) sessions of Speech
3 (30 minute ) sessions of OT
1 (30 minute) session of PT

The speech therapist already called and has been scheduled for next week. Waiting to here from ABA, OT & PT. I need to follow up to see if my Service coordinator received the RX from my ped for OT & PT

I ordered the Tony Atwood book and am reading some book that was given to us by our service coordinator. I am still very overwelmed with all I am learning but I envision it will get easier to get a handle on as time goes on.

It is funny because I have noticed James doing new things the past few weeks like coming and taking my hand and walking along with me. Last night he climbed in my lap and we watched TV for 10 minutes together him sitting still is something that almost never happens.

I do have a question what exactly is done at ABA therapy I know that it is to help him focus but I am unsure of what exactly they will be doing.

Be careful about ABA. It is a blanket term that in reality is practiced very differently, depending on the provider.

Find out what they will be doing EXACTLY, and see if it's a good fit. Traditional ABA would have been a disaster for my child and made him much worse off, not better.

Again, because PDD-NOS is a behavioral DX, it's only those people's OPINION that your child is actually PDD-NOS. So making sure they know what they are doing is key. It takes a lot of training to be able to Dx that....and like I said, the EXPERTS we work with are very hesitant to DX PDD-NOS at that age.

(Take a look at the NIH reports on the stability of PDD-NOS at your son's age....at least one report has early diagnosisbeing wrong up to 60 percent of the time.)

 

[cogero]

Thank you for pointing me to the NIH reports.

My personal opinion on all this and it is only my opinion as his mom is that DS is Speech Delayed. He can use some help focusing. He does understand me when I talk to him and he does listen to me.

I can see where they diagnosed him as PDD-NOS and maybe in fact he does have an ASD but I am not blowing it out of proportion because again only my opinion as his MOM is that if we can get some real speech out of him I can see progress with him. I do in fact know he is really frustrated about not being able to communicate.

The one thing that bothered me about the entire diagnostic process in all this is not one of the evaluators wanted to take into account that my son had surgery at 2 days old for a congenital birth defect. Our surgeon told us at the time of surgery that they did not know all the effects of putting a child under anethesia at that age. Also I have read several studies that show children who have surgery that young tend to have a speech delay.

I know everyone says I should follow my instincts but right now I am scared that my instincts and if I don't do something for him will result in a harder life for him and I do not want that.

Thanks for again for answering my questions everyone and the advice.

 

[jodifla]

Thank you for pointing me to the NIH reports.

My personal opinion on all this and it is only my opinion as his mom is that DS is Speech Delayed. He can use some help focusing. He does understand me when I talk to him and he does listen to me.

I can see where they diagnosed him as PDD-NOS and maybe in fact he does have an ASD but I am not blowing it out of proportion because again only my opinion as his MOM is that if we can get some real speech out of him I can see progress with him. I do in fact know he is really frustrated about not being able to communicate.

The one thing that bothered me about the entire diagnostic process in all this is not one of the evaluators wanted to take into account that my son had surgery at 2 days old for a congenital birth defect. Our surgeon told us at the time of surgery that they did not know all the effects of putting a child under anethesia at that age. Also I have read several studies that show children who have surgery that young tend to have a speech delay.

I know everyone says I should follow my instincts but right now I am scared that my instincts and if I don't do something for him will result in a harder life for him and I do not want that.

Thanks for again for answering my questions everyone and the advice.

If you think he is speech delayed, you don't have to accept another label just to get help.

Needs drive the services, not the label. Schools and EI will try to tell you otherwise, though. You can check out wrightslaw.com for details.

The caution on the label is this: Once the schools have decided your child is autistic, it can be difficult to get that label off of your child, even if it's not accurate. They'll often used the PDD-NOS label as an excuse to direct his education, for example, putting him solely in special ed and not mainstreamed.

Other info you might fight helpful is the Hanen method: Play to talk and Dr. Jim McDonald's Communicating partners website. All are child led, play based therapies.

After years of wandering through EI and pretty bogus school-based help, I ended up at a university research hospital to get help for my DS. Everyone else was GUESSING at what was wrong with him. We came away with a whole game plan. Seriously, almost everyone else was a rank amateur in comparison.

 

[bookwormde]

Lots of good ideas from others, floor time is a great program that you can easily institute at home by just getting familiar with the concept, if you google you will find the website.

I second the ABA concern comments, to many practitioners do not do it “well” and only focus on behaviors (which can be damaging) and not teaching broader skills from the.
“analyzation” .

And yes PDD-nos is only occasionally the final destination in the diagnostic “trail” it may evolve that your child has only a couple of characteristics in which case the diagnosis will be those specific items, or it may be that there are adequate number and impact of the characteristics to warrant an HFA/Aspergers diagnosis. Sometimes there are unrelated issues that are making what are typical leaning challenges grow into developmental issues which when dealt with remove the impediment.

The great thing is that you got indications early and can “try” different supports. Just be sure to view anything you do with a “critical” view and discard what is not helpful and move on to other possibilities.

One thing to remember is that communication is not just verbal so again the floor time program can help greatly with the non verbal and once non verbal communication is robust it can often lead to a structure for verbal communication to start or be enhanced. Just interested did you find the Attwood book helpful, with the early intervention your child is receiving with the most current methodologies the likelihood of your child being high functioning has increased immensely from the typical outcome in the past.

bookwormde

 

[Nik's Mom]

Hi cogero,

I'm a mom to 2 autistic sons age 10 and 7. DS 10 was originally diagnosed with PDD when he was 4, then was officially diagnosed with Autism at almost 7 years old. I know how you feel. It all started with a speech delay. DS spoke 2 languages, but at 2 years old, he lost his 2nd language and lost a lot of his english vocabulary. The pediatrician and speech therapist blamed this on us for teaching our son 2 languages. We ended up switching to a new pediatrician, who referred us to an amazing pediatric neurologist and we finally received a PDD diagnosis. Once we got into the State Autism program, ds was evaluated again and was diagnosed with Autism. Getting ds diagnosed was such a long, bumpy road for us. I do not look back at those days fondly. With our 2nd son, it was not as bad to get him diagnosed.

Allow yourself the time to grieve. It's ok to cry and feel bad for your child now. Then you can pick yourself up and start fighting for your child. Believe me when I say that the fight never ends. Life with an ASD child is definitely a roller coaster. There are moments of frustration and fear, then there are those special moments of joy that words cannot describe. I live for those moments. I always liked the Steve Martin movie called "Parenthood" because there is a scene where they are talking about family life being a roller coaster. That really hits home with those of us living with a special needs child.

You will find that with a good speech therapist, you will begin to see improvement with your son. O.t. will also help out with the motor skill issues. Be sure to ask the therapist for any things you can do to reinforce what your son is learning in therapy. Also, once he is 3, try to get him into a special ed preschool program with your school district.

Good luck to you!