PDD-NOS or SPD w/ Speech Delay

by Elise
(Cleveland, OH)

My son Ethan just turned 3, my husband and I first noticed something was wrong when Ethan was 18mos.and he wasn't speaking. When he was 2 and only had about 30 single words we talked to his pediatrician and were referred to an Occupational Therapists.




She diagnosed him with Sensory Processing Disorder with a speech delay, she was able to tell that most of his behavior was because of sensory issues, where as I just thought that his behavior problems were just terrible twos and what I thought was just a very difficult personality because he had been very difficult almost from birth.

I have an aunt who works at a school for children with developmental disabilities and after my son got the SPD diagnosis she started to insist that that he was autistic because he acted just like every kid in her class and that the OT just gave him a SPD diagnosis because it was easier. Also that she (the OT) wasn't qualified to make a diagnosis, only a neurologist could do that.

To make a long story short the neurologist gave him a diagnosis of PDD-NOS which puts him on the autism spectrum. He specifically said that my son does not have autism but that since he is exhibiting some symptoms (mainly two- delayed speech and delayed imaginative play which have both seriously improved over this last year), he implied that my son would have a better chance qualifying for service provided by the government and also the therapy he's gotten so far is covered by my insurance. He also said that he would always have PDD-NOS but that he would eventually grow out of the symptoms.

The thing is the therapists and teachers at his school (including my aunt) consider PDD-NOS to be autism and I honestly don't believe in my heart that my son is autistic but that without a diagnosis on the AS that he probably would not get the help he needs for his sensory and speech problems.

Is this something that seems to happen alot and should I just let it be?



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Aug 16, 2017
Rating
starstarstarstarstar 		PDD / Speech/ sod help!
by: Anonymous

My son just turned 5 and was physically ahead his whole life, but had a speech delay. He has a few sensory issues that were causing the delay. He looks and acts perfect! But, the very existence of the sensory issues puts him on the autism spectrum.

My husband is a physician, so I wanted to fix the problem, not get a diagnosis. So we turned to the Brain Balance Center with much fear and skepticism. We were desperate.

Last November we did his initial assessment. His left brain (at 4 years old) was 4 years old and his right brain was 2. Thirty-six 1 hour classes later, his right brain is 5 years old and his left brain is 4.

I can't tell you the improvement I have seen in him. He holds a pencil correctly, will color, can track with his eyes without turning his head. He is so much more aware of the world around him. And he wants to learn. He is still a little bit behind in speech but barely. And he is the leader in his class at preschool!

I cannot recommend the program highly enough and my son is only at the 1/2 way point.

https://www.brainbalancecenters.com/
Jul 26, 2017
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starstarstarstarstar 		Similar situation
by: Anonymous

My daughter was also diagnosed with PPD-NOS which is in fact on the autism spectrum. Its still hard for me to talk about but I came across this page and wanted to share my experience.

My daughter had a few words before she was 18 months and then she stopped talking. The dr said that because it was only a few words that it wasn't considered a regression.

She just turned 3 last month and still doesn't have a lot of words. She is in speech therapy once a week but I believe she needs more. PPD-NOS is considered on the autism spectrum and you should try to take advantage of all the resources you can with that diagnosis.

I would feel the same way about the diagnosis bc my daughter is brilliant but she stims and I dont know why. I dont know if its excitement or anxiety but she stims which makes me think yeah this is more than just a speech delay. I hope that when she does get her words that she wont stim anymore but we will see.
Jun 22, 2017
Rating
starstarstarstarstar 		Unsure
by: Anonymous

I'd love to here from anyone that previously wrote or anyone relating to my story that can shed light on whether or not I should worry about my son I made the last comment titled "unsure"
May 18, 2017
Rating
starstarstarstarstar 		Unsure
by: Anonymous

My son is 4 years old he says a lot of words he talks all the time but he has problems answering certain questions and answering people when they ask him things like how are you but like I said he has no problem telling you what he wasn't or how he feels.

He has good imaginative play and he is very social.. he has no problems participating in play with other kids he also has no problem walking up and saying hi to anyone and every kid he meats he exclaims "look mommy my kids" he knows his shapes colors and how to spell and write his first name.

he has no gross motor function problems or fine motor function problems that I have ever seen. He doesn't have problems with light or sound we take him to the movie theater all the time. We took him to the pediatrician and she suggested getting him evaluated for PDD nos so I guess we are but the waiting list can be as long as 8 months.

I don't want him to grow up thinking he is less than or have to be put in special ED just because he can't listen in a classroom (he has never been to class before) he is so smart but I don't know what I should do or how if I really believe he is on the spectrum I guess I want to know if anyone has been in a similar situation.
Feb 28, 2017
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starstarstarstarstar 		Please don't let the "Spectrum" label scare you
by: Anonymous

Hi everyone,

My daughter was diagnosed as on the Autism Spectrum nearly 4 years ago at age 3.5. She's 7 now. I was in shock. I knew little about Autism and wasn't expecting the diagnosis. She had some traits that fit the criteria but she did make some eye contact, and was verbal, so I didn't think she qualified.

I'm here to say that our accepting the label (in part as a means to get her individual help) was part of her progress. The label won't change your child. The label opens the door to help. My daughter has had 1-on-1 help (ABA) in our home for 3.5 years and last week she graduated from the program. At first I hated the label but over time it's bothered me a lot less.

My daughter is doing great and I encourage you not to fight the label/diagnosis if your child is diagnosed this way. There's lots of support and hope out there! Good luck.
May 31, 2016
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starstarstarstarstar 		I agree
by: Anonymous

My son is almost 22 months and doesn't speak anything, doesn't even try to mimic animal sounds except for a dog, but there is no way he is autistic. He shows no other symptoms. He doesn't like getting sand on his hands or feet or walking on wet grass, so someone suggest spd. Haven't taken him to a speech therapist yet, but at his 18 month checkup, the doctor wasn't worried and said he isn't autistic. Glad to find someone else with similar symptoms that doesn't have an autistic child. Hopefully he speaks soon.
Nov 13, 2014
Rating
starstarstarstarstar 		my son is 10 yrs old
by: Anonymous

Ever since before he turned a yr I thought he had autism till now he's never been diagnosed he has signs had him in early intervention everything what elese can I do they say its speech delayed I just want my miracle boy to have an awsome life without being picked on I cry all the time he says how come I can't eat the things you eat and he says he has eating problems I love him sooo much help please
Jul 30, 2013
Rating
starstarstarstarstar 		5years Old and a fighter!
by: Anonymous

My daughter is now 5. I have read all of your posts and I am amazed by the overlapping of our stories. I have been where most of you are. My new hurdle is getting her ready for kindergarten. My daughter had speech delay and other noticeable delays with play and interaction. She had very bad tantrums that most of the time made me cry. We would tip toe around her not to stir her up. She was out of control most of her 2 and 3 years of age.

Our saving grace was teaching her Sign language. Very helpful for sensory issues in kids. Highly recommend teaching this to reduce frustration in communication and comprehension. This in no way will slow down their speech. It actually helps to slow down and put words together with the use of their hands.

We do have her on ADHD meds already and I can say that this helps with the impulse controls and bad decision making. It gives us a chance to guide her and work with her for longer periods of time to figure out what works for her and what is difficult for her.

We talk in short burst with her. We know that sensory overload frustrates her and talking in her face frustrates her because she cannot process fast enough to form an understanding to what we are saying. We have to form eye contact, talk in a soft voice to not hurt her ears and give her short bursts of information to give her the time to process what she is hearing. If we talk too loud or yell, she cannot process anything we say. This and other things like brushing hair, hot water, low muscle tone, ect...

Give the teachers a break down to what works and what doesn't. This helps with us. She does not qualify for an IEP at this time, so I have to open a line of communication with the teacher to help her understand that she isn't throwing a fit because she is mad, but that she is confused and not processing the information fast enough and is lashing out. It is all a process and every year is different from the next. But for us we are very fortunate because my daughter adapts to her surroundings and tries to find alternatives to reach her goals set for her.

Just keep trying new things to see what works, if it doesn't ask around on FB or other social networks...someone has been thru this and may have some ideas to help you and your child.

Don't reinvent the wheel, there are a lot of us out there who can point you in the right direction for support or ideas for issues you are up against!
Jan 16, 2013
Rating
starstarstarstarstar 		Recently diagnosed with ADHD and PDD :(
by: Michelle

A psychologist just recently diagnosed my 4 yr old son with ADHD and PDD...I don't know how to go about getting him the help that he needs I had him in preschool but had to take him out he was staying frustrated and didn't understand what was going on...he also has a major speech delay...I'm taking him to speech therapy and a place called ABC therapy and he gets tutored there once a week for an hr...I'm afraid if he doesn't get caught up that he's going to have it really hard at school...it seems like u can't get anybody to help anybody anymore...it's a shame to these kids need help! My lil boy does better and learns better one on one....if anybody knows anything please help...thanks so much in advance
Oct 02, 2012
Rating
starstarstarstarstar 		Don't Give Up
by: Anonymous

My 4 year old son was recently labeled possibly autistic because of his significant speech delay. I outright rejected the uncertain diagnosis and prefer to focus on getting him the support services that he needs at this time. I refuse to allow a label to define my remarkable son! So, the fight begins. Take heart to all of the moms (and dads) who are faced with this challenge. Stay encouraged, and never give up on your children- we owe them that much.
May 20, 2012
Rating
starstarstarstarstar 		having the same problem
by: Anonymous

We started noticing something wrong with our child at 16months. At 19 months he was given the diagnosis of PDD-NOS. After being in a toddler program for children on the spectrum, he is excelling. We are seeing so much more eye contact and he is trying to communicate with us more. Our case manager and speech therapist say he is too socially interactive to have the PDD label, but without the diagnosis he would not be receiving the help that he needs. After seeing the comments here I see that maybe the PDD and SPD are commonly intertwined and that in the area I live children with SPI don't receive services that would benefit them. In the end, I am just happy that we can get help for him. But I do have the worry of him not receiving services anymore when he turns three because he won't fit the "Label." He will have to be reassessed at 3 to continue services.
Apr 04, 2012
Rating
starstarstarstarstar 		I AM FRUSTRATED
by: Anonymous

my son has the same thing to. I have never been told to go to a norologist however. They also digonoist him with adhd and gave him meds for that and i don't even think he has adhd. In fact he stating going to an ocupational therpyist and she said he has kind of low arousal and he jumps around a little to amp him self up. The meds did'nt work and so he is not on them. i think where i live no one really knows what there doing i am so frustrated.
Aug 22, 2011
Rating
starstarstarstarstar 		I have the same thing with my 4 year old
by: Heather

I was told the same thing by the psychiatrist that evaluated my son when he was 3 for the Child Find Program thru the county I live in. She did the C.A.R.S test on him and said he had markers for autism and was diagnosing him with autism so he would get the funding and help he needs. He is speech delayed to the point where at 4, he still only has a couple of words and the speech he does have is very hard to understand what he is saying. She also diagnosed him with multiple learning disabilities because he has problems with receptive language. He went to ECI for the 2010-2011 school year and we have seen a lot of progress with his receptive skills and he is trying harder to communicate with us now also. I don't really agree with the autism diagnosis. He doesn't stim, he makes eye contact, he has no issues with color grouping or any traits like that. He doesn't have to have any special routines, although he does miss school and does better when he has that routine on a daily basis. And he is a very lovable and social child. He doesn't understand about others personal space and gets right in your face when he is trying to be social with other kids, however I have read that kids don't understand about others personal space until the age of 5 so I don't think that is an issue at this time. I accept the diagnosis on paper if it will help him get the help he needs with his learning disabilities, but in my heart and mind, I don't really buy it that he is autistic. Sometimes it is easier for me to buy into it just so I have an explanation for his speech delay, but I just don't see the signs that th psychiatrist sees.
May 20, 2011
Rating
starstarstarstarstar 		keep fighting
by: kcf333

Don't stop believing in the SPD diagnosis. If you don't think you have a child on the spectrum but they have behaviors that overlap autism, then you are most likely right! Many psychologists will not take the time to educate themselves on what has been evolving in the world of sensory integration dysfunction. They will have no choice when it becomes a diagnosis. Many of the kids on the spectrum will come off of the spectrum. My child has sensory issues, speech delay, dispraxia, hypotonia, and more but is very socially connected. She has no trouble getting services for Speech, PT and OT due to delays so I will not sign off on ASD. If I had to take a PDD diagnosis to get her services I would but I wouldn't go down without a fight! Labeling a child because they can't figure them out is NOT an answer! Keep teaching your school districts and therapist and giving them therapy at home for sensory issues! Them more they hear it the more they have to listen!
Mar 05, 2011
Rating
starstarstarstarstar 		Thank You
by: Anonymous

Dear Anonymous "We're In The Same Boat,"
I want to thank you for your posting. My 4 yr old son was just diagnosed with PDD-NOS in Dec. He has language delays and sensory issues.... that's it. While we qualified for early intervention, he did not qualify for the 3-5 intermediate unit's support. As time passed without therapy, his quirks became more noticeable.

I took him to a Dev. Ped. and she said he is "very borderline" but that if she doesn't give him this diagnosis he will continue to get passed over for support. I have been so ripped up inside that I allowed a diagnosis that carries such a heavy stigma to be placed on my child. He is quirky, but he is in no way on the spectrum. I turned to the internet to find some insights about similar situations to mine and I found your post. Your perspective is so wonderful and appropriate. It made me remember what my end goal has always been (to help my child) and not to get hung up on labels.

I want you to know that I have actually printed out your response and keep it in my wallet for times when I lose my focus. All in all, whatever it takes for my child to have his best life, that is what I will do. Thank you for your calming words of wisdom.
Nov 24, 2010
Rating
starstarstarstar 		help for initiating diagnosis
by: Anonymous

I have been telling my pediatricians since my daughter was 9 months old that she just seems different--never wanting contact with other children, an unusual tolerance for pain, extreme tantrums, extreme shyness and anxiety around others, inconsistent reactions to loud noises and textures, language delay, and unusual need for rough play. However, the doctors never seemed concerned, probably seeing me as an over reactive first time mom. We even had her tested by our state's early intervention program who found her "shy" and ineligible for services based on the testing. My husband and I were happy at the time, but we took her out of her large daycare center, as it caused her so much anxiety, and placed her in an in-home daycare setting (with two other children her age). Our daughter is now three years, two months, and it seems that the gaps between her and her peers are growing. Her daycare provider and many of my coworkers (I am a teacher) suggest autism, but I believe her issues are more sensory-related. We have a meeting scheduled with our school district's child study team to see whether she would qualify for an evaluation. I'm afraid she won't qualify again. Seeing that SPD is not in the current DSM, should I focus on those behaviors that align with PDD in order to at least hope for an evaluation for my daughter?
Sep 29, 2010
Rating
starstarstarstarstar 		Suffering the same issues
by: Anonymous

For all of you have responded, you've been a big help! My son is 3 1/2 with SPD and ASD; we have been told most likely Aspergers,but the public school system and his OT do not see ASD. Only SPD. With his ASD diagnosis he can get services through the state but we are battling for services with the school. So just like you, we are getting mixed diagnosis. Anyone have any ideas on how to get public school services?

Beth
Oct 21, 2009
Rating
starstarstarstarstar 		We're In the Same Boat
by: Anonymous

Our 2 1/2 year old has been given diagnoses of Apraxia, SPD, and PDD-NOS by three different specialists. Two specialists at one of the countries best hospitals said there is no way she has autism because she is too socially connected. The one mental health professional who gave her the PDD-NOS diagnosis said that our daughter was very "gray" and "quirky" and if she could say that she was "at risk" for autism and still get services, she would have. But the system doesn't work like that so she gave her the diagnosis and now we get all of our services for free.

I look at it this way: I know she doesn't have autism and I don't need to tell anyone but those who can make a difference in her life. The ABA that we get now because of the diagnosis has helped tremendously with her speech and SPD (they do lots of SI during session). So, to get by every day knowing that someone thinks my daughter has autism, I remember what the neurologist told me: almost all children on the spectrum have sensory issues, but there are children with sensory issues that don't have autism.

SPD is often misread in children because they can appear unresponsive or uncooperative, some "signs" of spectrum disorders. The neurologist also said that if our daughter didn't have a speech delay, no one would be giving her a second look. Take the diagnosis, don't tell anyone unless they can make a difference and exploit it to get your child the help he/she needs to improve playskills, speech and SPD. SPD is not usually insurable, whereas PDD is. And, contrary to what you've been told...I've been told that you can grow out of the diagnosis because you grow out of the symptoms.

One last thought: PDD may be considered a disability in your state giving you secondary insurance to help cover additional ST and OT visits. Take advantage of that and have faith that with this extra help, the diagnosis will be long gone in no time.
Sep 09, 2009
Rating
starstarstarstarstar 		You are not alone
by: Kim Sullivan

My son has sensory processing problems but has the same diagnosis. There is no way he is autistic. We did so much intervention with him, daily constant things to work on his issues. He needed the Autism diagnosis to get the help he needs with sensory issues at school. The only problem is the insurance did not pay for any of his treatments we paid out of pocket and he is now uninsurable if we need private insurance, so I can't open my own business.

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