Hi Amy,
Welcome.......I have a 29 weeker myself. 11 weeks NICU.
WOW.....In Australia I have the opposite reaction from Doctors...... I am constantly being told that being premature has no effect on the diagnosis for autism and no allowance was given for Lachlan's prematurity. I have heard of lots of kids who are former prems being given Autism diagnosis incorrectly.
I believe Lachlans diagnosis of classic autism (low functioning) was given prematurily (excuse the pun) and I believe a lot of his issues will resolve themselves over time.
As you are well aware, a premature baby has such a different start to life than a full term baby - I believe myself that delays of up to 2 years can present themselves in the first few years.
Mysh
My son was a 27 week er, It was EI who first said Autism to me, I new there was something more than his preemie problems, he did alot of stimming!! ,and had some very strange behaviour,he was dx'd at 2.11.
Linda
Hi Amy! Glad to hear you are continuing to help your son get the boosts he needs. My son was a 26 weeker, so I do relate to the whole high-risk, developmental delay thing! Cole is now 6, a kindergartner, and is PDD NOS.
Here's where he is, what we did, and a couple points you may not hear from the other folks with full term ASD kids.
ABOUT COLE He is verbal, affectionate, and bright, but is just awful at conversation. Because he has a late birthday, he was able to spend most of his day in the PEI (preschool early intervention) classroom where the adult:child ration is great. He spent a couple hours or so each day in regular kindergarten with the help of an aide.
WHAT KIND OF CLASSROOM TO CHOOSE I am assuming your son will go into PEI himself this fall. If you believe him to be fairly higher functioning on the autistic spectrum and if he has no siblings to roll around and play with, you might consider putting him into PEI, but also do a couple days of regular preschool for "peer role models". Let him hang out with neuro typical kids because he may learn proper social interaction from them. If his buddies in PEI are at his level or worse, relative to socialization, then he's not going to have them initiating tons of play. Playing with little kids is harder than adults because they don't cater to you.
GETTING THE RIGHT SERVICES It took us ages to get a diagnosis because of the preemie thing, then the docs flip-flopped on it. There's a chance that because your boy is still little, you may experience the same thing. The school board may prefer to categorize him as "developmentally delayed" for now, which is fine depending upon where you live.
We live in New Orleans, and although the food and music are great, the services for autistic kids are lousy! Other states, like California, New Jersey, and New York - amongst others - DO have specific programs for kids on the autistic spectrum. You might put out a post listing your state and ask some of the other parents what ought to be available. If the school system DOES have autism-related services, then push for an autistic spectrum disorder diagnosis.
HOW DID HE GET THIS WAY? Everyone with a child on the spectrum wonders this, but when you've had a kid win the Rotten Luck Lottery twice (micro-preemie and autistic!), you tend to question statistics. Most of the stuff I've researched has shown that very early preemies - 29 weeks and younger - DO have a higher incidence of the milder forms of autism.
The general thought is that they have so much more incidence of oxygen deprivation, brain bleeds, gawd-awful medications, too much "fetal" sensory stuff (pain from heel-sticks, noise & light), high bilirubin levels, etc. that their wiring forms differently. If you ever read anything about fetal neurology, you will want to FAINT when you know what your son's brain was supposed to be doing while he was in that Isolette instead of you. Its amazing the neurological stuff that happens in the third trimester! Like, the entire brain ROTATES inside the skull!
Plus, our boys were premature because something was wrong in utero, so whatever THAT stuff was - could be the culprit. For me, it was sever pre-eclampsia. We know he wasn't getting enough juice because he was only 1 lb, 5 oz. He had no brain bleeds (IVHs), but he did have fungal sepsis. Awful. We did do a couple MRIs to make sure all was well - it is.
Unless your boy's had some neuro trauma, an MRI will probably show nothing wrong. Whatever is going on is down at the synaptic level, and until your child is old enough to do one of those functioning MRIs (horribly expensive and not covered by insurance), you won't know if/how he processes stuff differently.
THERE'S A DECENT CHANCE THE PREMATURITY DID THIS This may not make you feel any better at all, but it did me. I hooked up onto some preemie websites and started learning about the higher incidences of mild autism in micro preemies. Then I hit all the medical search engines (even posing as a doctor, once!).
All in all, it points to the prematurity as the statistically most likely catalyst for Cole's autism. The only reason this makes me feel better, is that if our family does NOT have a huge genetic predispostion, then maybe both my sons can become fathers without worrying whether their kids will be high risk for autism.
Hope this helps a bit, Amy. You're a terrific mom for checking into all this even before the "experts" want to diagnose him. Even if your son has just got a preemie hangover, the services that go to autistic individuals will benefit him too! Keep us posted!
LeAnne
Hi and welcome! My twin boys were born at 30 weeks. I have been trying to get a diagnosis since they were 2, but like yours since they were premies I was told that that was the problem. We see yet another developmental pediatrician in a couple of weeks. I am hoping for something other than developmentally delayed this time. They are delayed across the board but primarily in speech, but because of the prematurity no one has wanted to diagnose them yet.
Glad you found the board!
HiAmy - you are right about the horrors of the NICU! But once you suspected autism, didn't it just p___ you off?? I felt like Cole had won the Terrible Luck Powerball Lottery not once, but twice.
Get that ABA going! New York rocks.
Hi, I am new to this board. I have a 29-weeker who is now 2 1/2. I have known something was different with her since we brought her home from the hospital. She is in Early Intervention with the school, but they skirt around the Autism issue. Finally, I got a Dr. to agree that she should be screened for Autism. I am finally at the stage where I am trying to get her to a child psy. to get a diagnosis. (tired of being put-off by the schools saying she is too young to be dx'ed and that she is still "catching up") However, I am getting the idea from all I am reading that it may not be a simple for us, just for the fact that she is a preemie. I would love to hear from any other preemie parents who have gone thru this process.
Am I starting the process out correctly by getting her in to be evaled by a Child Psychologist? Thanks so much for any help, Rachel
Another Preemie here. I cannot tell you much more than that because Tuhina was adopted from India, but she was under 5 lb when taken to a hospital by family, at an estimated 3 months of age ... she is beautiful, affectionate, loving, verbal ... and was diagnosed after years of speech, OT, and avoidance of the "A-word," at age 6 years, after referral by her school SLP. Mostly because she does not socialize with peers, but her cognitive profile, auditory processing, and all else are right out there for the world.
Wish I had had more preamble to being hit with the diagnosis.
Anyhow, since you revived the thread, welcome, Rachel. And ... even experts disagree on diagnosis -- according to one book T is merely SID, according to another she is autistic. Do your footwork carefully -- WHAT do you want from diagnosis? If the answer is therapies and services, be sure to find a diagnostician who works a lot with milder-spectrum kids and can make good recommendatiosn to the educators.
Hi Linda,
Thanks very much for the reply. In answer to your question, WHAT do I want from diagnosis. I guess I want to know what we are dealing with. So that she can get into the right programs and we can learn how to respond to her "odd" behavior. We live in a small town and I do not get support from most of my family. I know they dont mean it, but they just don't understand what it's like to first of all have a preemie, second of all, have a preemie who doesn't act like all the other kids around.
Thanks for the advice in finding a dr who works with milder-spectrum kids.
Rachel, I have a friend whose son is a senior in High School. He is doing okay, now, but because she developed a relationship with a developmental psychologist (whom she liked), when he was very young, she kept him with that psych and he was never diagnosed as on the spectrum. She always felt he should have been and he did not get the services he could have benefitted from.
She advised me despite liking this psych, to use another hospital across town for diagnosis.
But ... will your insurance cover a diagnosis of developmental delay? Many do not. If not, or if you do not think you will get a positive diagnosis leading to more services, it might be best to hang fire on the diagnosis. I know in EI my daughter was labeled "Young Child with a Developmental Delay." It was not until she was school age and could not handle the classroom that she was perceived as having a "problem." Now she is in SpEd for half of the school week, including reading, writing, math, OT, Social Skills, Speech and Language ...
Another preemie here...Mason was a 34 weeker, but did have the breathing problems and the brain bleeds...well they think he had brain bleeds, but we were unaware of it at the time...he had a seizure when he was 2 and they did an MRI and found scarring in his temporal lobe. They weren't sure if he could have had an earlier seizure that caused the damage or if it was bleeding that might have occured from being a preemie...I guess in Mason's case he was only 6 weeks early and brain bleeds aren't common I guess, so they never looked?
It took us until just recently to get an autism diagnosis...his first neuro said autism to us and sent us to a neuropsychologist...this doctor told us because he had brain damage and was a preemie she was hesitant to diagnosis autism...so I dropped the subject...I put my trust into these doctors...but as months turned into years and my son only seemed to be getting worse and worse I kept taking him back to these doctors only to have them refer us to other doctors...finally in March I was referred to a psychologist that deals with mostly autistic children...I told the psychiatrist that we were seeing that I felt like this was a waste of time because he has been evaluated over and over and NOONE has ever diagnosed him with autism...well this pychologist did...he told me that it's not fair to Mason to have him not get the same treatment just because he has an underlying problem.
I'm one of those Mom's that beleives if you see "autistic traits" don't write it off...push for that diagnosis and get the treatments as soon as you can...we waited because I didn't know any better and now Mason is already 6 years old and EVERYTHING I read talks about earliest possible intervention...I'm not saying for sure that things might be different, but I definitely can say I will never know and that is so hard for me...playing the wait and see game is just too hard to deal with!
Good luck!
I am reluctant to wait much longer to take her to a child psy. because I don't want to find out when she is already in school and struggling. I want her to get help asap. I am 99% positive that she has Autism or something related to Autism. I am afraid that when we take her to get dx'ed they are going to tell us it's too young to know for sure since she was also a preemie. And no, our insurance does not cover any of this. We have saved for months to get her into a Child Psy. so I don't want it to be a waste of time, but on the other hand, I am going slightly insane playing the "wait and see" game. I really need some direction from a professional who is honest and well-respected. I have gotten referrals to a Dr. Maltz in our area and have been told he is the best in Michigan. Anyway, thanks so much for responding to my post. I dont feel so alone.
I think your best approach is to tell him exactly what you just said here...that you are paying for this out of pocket, you want help now, not 3 years from now and the wait and see game is just that...a game and you don't want to play games with your DD's life! Tell him too, that you heard he is the best and that you wanted someone who was honest and well-respected. I don't want to tell you to have a chip on your shoulder when you go, but just let him know you have educated yourself on this a lot and you have heard early intervention is the best...also mention us that had to play the wait and see game...just be honest with him and hopefully he will be honest with you! Good luck and keep us posted on how it goes!
Thanks so much, I will let you know how it goes!And, Rachel, stick around here for long and you realize, "getting a diagnosis" is a focus of SO MANY discussions!
Ok- I have a 27 weeker who is my TYPICAL child....not great with coordination- but 'up there' everywhere else...he is on track...
NOW- my full term one- he is my Autistic one. GO FIGURE!
I just wanted to chime in- I have a preemie too. He was 1 pound 14 ounces....he is going in to 3rd grade and going to Karate class in a little bit....
Good luck!
I have a 32.5 wkr (IUGR and GERD), who is PDD/NOS and later a FT who's autistic.
My heart goes out to all of you who went through giving birth to, and fighting for, a Preemie, and I know a few moms who have. I can imagine nothing harder. So yes, I can definitely see how the therapies, etc. feel like nothing to you, Amy.
I feel SO damn lucky not to go through the NICU experience, with Tuhina. It saddens me she went through her first three months neglected and abandoned, and had to fight for her life basically alone. Of course, I also wish I had been there to help her fight.
We were told that members of the family (ie not her mother) took her to the hospital at an estimated 3 months of age, and she was emaciated and scrawny, and had horrible scabbed-over diaper rash from lying in filth, unchanged. We do not know if her mother had died, or had just been overwhelmed and given up on her. I have one photo from that time and she looked horrible. By the time we got her referral three months after that, the foundling home had fattened her up and healed her, and she was absolutely beautiful. I only got the earlier photo, much later, right before we traveled to get her, and it nearly broke my heart.
She is, clearly, one scrappy kid to have survived as she did. Makes her who she is, and makes us work the harder for her, too.