Autism screen update

• By carleyr2005
• Posted November 27, 2008 at 10:39 am
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I'm not familiar with that specific screening tool; however, I suspect it's the same one my pedi used for both of my kids ( 1 & 3). I wouldn't give it a whole lot of clout. You have to remember Autism is the diagnosis of the day. I've worked in mental health for over ten years and have seen the trends in diagnonses-right now another big one a lot of kids are getting dx with is Bipolar disorder. While I do think preemies display characteristics that may mimic some autistic symptoms I really think that preemies have their own set of symptoms that need their own specific treatments-I just don't think science, mental health, or education has caught up with this idea. I also think because Autism is so "popular" right now that doctors are being overly cautious and over diagnosing to prevent lawsuits/liability, etc. Plus, I think your're absoulutely right to question the relevance of this test on your babies who really aren't gestational-age-wise ready for this test. YOu know your kids better than any one and if you doubt what professionals are telling you keep searching for one that you that you feel really "gets it". It took us two and 1/2 years to find an OT who specialized in preemies and who really understood our daughter and gave her the treatment she needed, which, against the opinion of the EI team, was not Autism related. My advice is to trust your gut-I think your questions are right on and you should keep questioning the profs; you probably know more about preemies than they do. Hang in there. I've been walking a very similar path with my daughter for three years so if you have other questions feel free to e-mail me @ baileyz1@charter.net.

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• By BarbaraK2U
• Posted November 27, 2008 at 10:43 am
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I've never heard of the test, but I have a preemie that's now 5 and is autistic. Here's how I look at this type of situation:

1. Yes, they're still young and a lot can happen. But you can't have it all ways! If you saw some signs of possible autism then you were right to get it checked out early. I don't know many doctors that would label a child as autistic at 18 months, but being aware and concerned and keeping an eye on things is perfectly appropriate.

2. Correcting for Emma's age wouldn't have made any difference. She lagged behind in everything and did things in her own good time. Preemies don't follow a set schedule any more than full-term kids hit every milestone "on time". It's not indicative of autism just because they lag behind, nor does it exclude the diagnosis. I just wouldn't worry about adjusting for age at this point.

3. The key to getting the best possible outcome with autism is early detection and treatment. If they're not already, make sure they're getting early intervention (if possible) along with any OT and speech therapy you can get. If you don't qualify for EI/speech/OT, then consider paying privately for a few speech and OT sessions and ask to sit in and observe. Learn what you can and apply it at home, then go for periodic consults to see what else you can do to work with your sons.

I will say that Emma began speech therapy at 18 months actual and within a very short time her SLP was mentioning her concerns about something being wrong with Emma. Unfortunately, Emma's early interventionist, who had tons of experience and who we trusted more than the new SLP, was adamant that Emma was simply delayed and would be fine. She had shown progress all along and she just needed more time. We remained clueless for about a year before I saw some things that clicked with me and I started pushing for an evaluation (age 2.5). Emma was evaluated and we were misled regarding the results: we were told she just had a "communication disorder" when she had, in fact, scored high enough to be classified as autistic. Many months later, after seeing Emma in a classroom setting with what should have been her language-impaired peers, the truth became painfully obvious and I took her to a developmental pediatrician, at which time she was properly diagnosed.

So my opinion is, it's better to be aware early on and be watchful than to be frustrated or annoyed. With luck, your children will outgrow any signs of autism and it will no longer be a concern. If not, it's best to be informed early and get them the help they'll need.

Keep your chin up! :-)

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• By socsmurf
• Posted November 28, 2008 at 10:53 am
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Jude had worried the doctor when we moved her form California at 13 months. Jude would not make sounds at the doctor or the first st testing. I knew he made sounds and words. Sometimes preemies take their time. Jude had MAJOR growth of his abilities between 18 and 24 months. I would suggest sitting in on the speech eval (making sure they are alone in the room when they do your speech evals) This is your right so please use it. Ask the ST person for advice after. Have you had their hearing and vision checked recently? I do not recall what issues you were worried about but when I did in home care for a resource center the kids I worked with they always had to try and get this done.


In general I agree with the above statement about Autism being the diagnosis of the day. Case in point if you look in the past we have seen the treads with ADHD, ADD, depression and such in kids. I am not saying there is not a spike in real cases and I am not saying Autism does not happen but I worked with austic kids and teens for about 7 years and now it is more on the spectrum that years ago might be considered hard core wallflowers.

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• By gladh002
• Posted November 29, 2008 at 11:19 pm
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It's really hard to hear news like this. I am sorry. There is so much worrying involved in parenting.

Our pedi didn't chart this checklist until both twins were 18 months corrected (or older--I forget now) because at 18 chronological (or 15 adjusted for them) one of them would have needed a referral for more testing. I remember looking at it and saying, "I think we'll wait a few months to chart the results." You are absolutely right in questioning the results. Perhaps your pedi did it out of habit since it was the 18 month check up and that's when she always does it. That's what mine did until we talked about it.

Like pp advised, just watch for further signs since you have information early on. He may develop in these areas but if not, at least you'll be in a position to be proactive. A couple websites I looked at said to administer it again after a month if they fail. You can dowload it yourself and do it again in a month. That's what I would probably do, but I am a bit compulsive. :)

I also echo getting EI if your boys qualify and they're not already.

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• By LucyEths07
• Posted November 30, 2008 at 1:22 am
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I have to agree with ''Bailey'.When i lost the ''Doctor''worship i had been raised with & started asking ouestions is when i started getting results.Now i question everything that has to do with treatment for my kids,Most of the time i can treat things ''naturally''.My 9 year old was diagnosed with Autism at 4 years old.Since then i have read anything i can get my hands on.Its amazing what diet change can do for kids.Sophia has been GF/CF for 5 years...wow what an improvement.We as a family dont do high fructose corn syrup,red dyes,major perservatives,additives,etc.it makes for very healthy kids! Educate yourself,research& question.God bless!!

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• By babalou
• Posted December 1, 2008 at 3:01 pm
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BarbaraK2U, I understand what you are saying about the importance of early detection and treatment. If my babies do have ASD, I would rather know sooner than later. However, I wonder if these screenings can also make parents overly worried?

Thanks everyone for your replies. My babies seem so happy and interactive. It just seems strange to me that something like pointing carries greater weight than good eye contact and affection. The M-CHAT screening assigns the most importance to pointing out objects, pretend play and shared interest when a parent points to something. My boys don't point, and the only pretend play they have shown me so far is playing with cars appropriately. They do look when we point something out.

The boys are in EI, and I let the therapists know about the M-CHAT. They are getting a speech evaluation this week. I hope I can get some more information!

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• By BarbaraK2U
• Posted December 2, 2008 at 11:59 am
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Funny you should mention eye contact and affection vs. pointing and shared interest (along with pretend play). Let me explain why:

1. Emma's eye contact wasn't all that great, but it wasn't awful either and she's really good at it now with us, not as much with others (but better). She always has been EXTREMELY affectionate (on her terms), but restless. You could cuddle/snuggle for a couple of minutes and then she'd be off. Or she'll play "nosey" forever and not want to stop. She smiles, laughs, etc. On that front, you wouldn't know something was wrong.

2. Emma NEVER pointed to anything, and NEVER tracked to where we were pointing. Still doesn't. For some reason, that's a huge cognitive leap that she just doesn't make.

3. Pretend play. Well, Emma's entire world has always been repeating, repeating, repeating. And to some extent it still is. She actually does engage in pretend play NOW (didn't for the longest time), but I often find that her "pretending" consists of acting out scenes she's seen on the TV, in a movie, or on the computer. Sometimes she'll even imitate what her sister has pretended with her. Emma's pretend skills are extremely poor, but she has them to a tiny degree, which is more than she had previously. She's always been fascinated with cars, too, but I wouldn't call moving them back and forth "pretend play". It's a nuanced difference, but she's exploring the physical characteristics of the car (how it moves, how fast it goes, etc.) rather than imagining she's driving it or it's in a race or something like that (which would be pretend play).

4. Shared interest. It's VERY hard to engage an autistic child in something that you are interested in but that has not already caught their attention. If Emma doesn't feel like "performing" by answering questions about something she's been shown or being led to a new activity by us, then it just isn't going to happen no matter what. Self-directed learning, play, and activities are VERY important to autistic children. Rote and repetition are often what they're most comfortable with, too. So to break that routine and inject something new can be next to impossible.

So as you can see, the M-CHAT is absolutely right on the mark! Eye contact is definitely a big indicator to an autism diagnosis, but it's not as big of an excluder. In other words, just because a child does make good eye contact doesn't mean they're NOT autistic, but if they don't make good eye contact it's usually a good indicator that they might be. Same situation with affection. Some autistic kids are extremely withdrawn and others are very affectionate.

The M-CHAT is honing in on skill sets commonly lacking in autistic children. I wouldn't worry at your sons' ages just yet that they are autistic, I'd merely insist on speech and OT services (if they qualify) to help them along.

Good luck and keep us posted!

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• By babalou
• Posted December 6, 2008 at 12:33 pm
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Update: We had our speech and education evaluations at their EI clinic this week. The boys scored very similarly. Both scored around 12 months for cognitive and adaptive, which I guess is considered a mild delay. They scored around 8 months for receptive and 9 months for expressive speech-a significant delay. I am obviously upset, but also a bit skeptical of these tests. I KNOW my boys understand more and express more than your average 8 or 9 month old-there is no question!

The good news is that the therapists don't see anything immediately alarming to indicate autism, they just want to keep an eye on it. They acknowledged there are red flags, but that the boys are definitely more engaging and social than you would typically see with autistic kids. Truman scored around his adjusted age (16 months) for social, Spencer a bit below, but not significantly below.

They want to place the boys in a twice a week classroom, where they would get speech therapy both in the class and individually. I think this will be helpful, but I wan't to assure they get enough individual time with the therapists. I will talk to the Family Coordinator next week about this concern.

Of course, my biggest worry is that the speech delay is due to a cognitive disability. My instincts tell me that these boys are not cognitively delayed, however. The other possible reasons could be:

1. a maturation delay (this is the best case scenario-that they are just "late talkers");

2. hearing issues-I don't suspect this is the problem, but we do have a hearing screen next week;

3. a language delay/disorder-either receptive, expressive or mixed.

Thanks for everybody's input!

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• By shy2066
• Posted December 8, 2008 at 12:31 am
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Hi babalou!
I somehow stumbled on this discussion and realized it's you!
I think your boys will be just fine. Give it some time and I think they will catch up. But I totally understand your concerns and you are a great mom for getting them evaluated and being on top of their development!
We are really due for some catch up lunch?
Will talk to you soon!
Susan

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