My "gut" lied to me. | Autism PDD

Okay, I admit that sometimes I like to stir the pot a bit. I know I am new to the boards and perhaps I am overstepping my welcome. Please don’t take offense.

I am not in anyway trying to diminish a mothers intuition, but all this talk about going with your gut sometimes makes me grimace. Am I the only one who’s “gut” has be wrong?

My son had significant language delays. We concluded that we should talk more to him, so we did (bty, it did not help). My sister, who is a speech therapist, explained that sometimes you need to talk less (especially if there is a receptive delay). One or two words, and uses gestures or signs. It was not until we started with the one to two words and basic sign language that we began to see improvement.

Am I the only one?

No - this is a great point. Many parents (me included) train our language delayed children to communicate in a very structured Q&A format (by constantly asking them questions rather than simply talking to/with them) rather than a more natural flow of statements, observations, questions, etc. You're right on the money. fred39353.4959606482Gut feelings let you know when something is amiss or if something is right.
They should guide you to find anwers, not give you all the answers.

I think what you went through is totally normal. Most of us teach our
children through trial and error methods.

I ont know. With my son I am supposed to talk at a consistent pitch & "nice and smooth". ike you are slowly drawing a line with a pen on paper - that is how I am supposed to talk to him because he has severe stutter/ fluency & tone/ pitch problems. You just have to figure out what is gonna work best.
BTW It is SO hard to talk like this. try it for five minutes

Sometimes I forget & slip back into normal speech LOL

Hi Welcome!

Your post doesn't sound offensive-just honest. To me, there is also denial. Your response sounds like good old fashion it'll get better on its own, when deep down you probably knew better. At least your sister was there to point you in the right direction.

It is important to be educated and make good decisions. A good time to go with your gut is when picking people to work with your child and things like that.

Sometimes it is hard to determine what guides you, and that's why we as parents seek things out, like this forum.

I don't think this is a matter of going with your gut. You were going with what your logic told you to do. If you talk to a child more, then you would logically think they would pick up on this. With a child with autism, this is different. They often process language differently and are often not good imitators. Also, if others are doing things for them - then why do it yourself?

I think most of us post that you should "go with your gut" when we are talking about if a child has autism or not. Moms and dads often know deep down that there is something "off" with their child. Even highly trained professionals have told parents to "just wait and see" how things develop - even though the parent is INSISTING there is something up. When I hear that, I say to parents, "Go with your gut. You know your child best!"

But as far as teaching my child skills, I don't have a gut!

So, you are going against your instincts, training and logic by saying less in order to teach language. But you are not going with your gut if you trust professionals who say your son does not have autism, if you deep down think s/he does. Just my opinion!

That s a good point - I think feel that if your gut is saying there is something wrong its okay tio follow it through ( what is the worse that could happen - you may have been overconscientous ) but if your gut is saying things are okay - it could be jsut lack of knowledge or just hope

I know my gut used to tell me that R was totally not ASD but that was becasue I did not know much about ASD at all ( and also becasue I did not want to beleive it )

Well, let's just say my intuation is not perfect but it still was better than
most specialists we encountered.
I knew my kid was different but I had no clue that it was asd until he was
7 - I missed many many red flaggs. However just by intuition we did
many things that the doctors would have recommended if he had gotten a
dx:
I took him out of the house for activities every day; he went to early
childhood groups from 3 month old to 5 years old every week; I made
wallposters with different facial expressions and practised 'reading
emotions; I spoke in short sentences and prompted for answers; we
played lots of boardgames and we did lots of stuff involving the sensory
system and I made him blankets out of different textures...
While he did not get a diagnosis early and could have benefited from an
earlier IEP,speech and possibly O.T., I would not have done that much
different at home than what I did. He gave me the right clues of how he
needed to be parented and for the most part I picked up on them.
I KNEW something was up with C when his brother started to talk and he didn't. When I heard stuff like "he's a boy, lots of boys are late talkers" I just wrote it off as wishful thinking bs. I KNEW there was more to it and I'm so glad I followed my gut and got him evaluated at age 2. (I'm not a "wait and see" kind of gal anyway - impatient and action oriented to a fault LOL!)I had a lot of problems because of being taught expressive language before my receptive language was up to it.

Commonly, parents are advised to speak less and use just the important words because speech delayed kids often have processing problems.

I think that when people talk about listening to their gut, it's not about decisions like this. It's when we get a certain feeling that things are not right. That a child doesn't belong in a place or that a certain adult is not doing right by our kids. I am very, very well-educated in autism since I've been dealing with my son's PDD-NOS for 16 years. I am also a professional special education advocate. I believe in gut feelings, but not for things that can be addressed using more logical means. PROGRESS is the name of the game. When it comes to language, progress can be easily gauged. If a child's progress is regularly tested (or is obvious) then the method that is being used is working. There is a TON of research about what works in teaching ASD kids to speak better. "Gut" has NOTHING to do with this sort of decision. But gut does have a bearing on decisions about quality and about where your child is might be misplaced. Some decisions are not based on research. Research-based decisions are not really subject to the "gut" but decisions that are more subjective (like what's "right" for a particular child) might be. If in doubt, always go with what research shows works. Sometimes, though, it's important to listen to a badly screaming gut!

Thank you all for your comments. It was very interesting to me that we don’t all interpret the phase “go with your gut” in the same way. Thank you for taking the time to explain what it means to you.

SaKa...my gut did not lie. But it sure enjoyed hearing the following:

"He is going through a phase, he'll talk again" (as he lost all his words)

"Boys are late talkers"

"He's just shy" (lost all eye contact)

"He won't talk if you get everthing for him" (newly devoloped habit appearing around 2 years of using our hands to get what he wanted; prior to this he pointed and spoke)

"He just caught a virus" (when we rushed to ER after his 18 month boosters with a high fever that would not abate, body rash and possible seizure)

All of these things were said by professionals at the time when I NEEDED to hear it the most. I needed to hear there was nothing "wrong" with my son. But in the back of my mind my gut was churning. I KNEW something was wrong. I finally opted to search the net. I found this board. And others. And I knew what was happening to my son. And I mourned. Then, a few weeks into it, I read GTTO's page. And I stopped mourning. And I sought help. We have just started therapies and my son is improving. The only thing I mourn now is the year I lost listening to professionals tell me that everthing was AOK.

PS I learned more from the parents, caregivers and people with autism on this board than I have ever attained from any doctor's visit;

My son was exposed to four laguages btw 18 m.o and 3 year on a daily basis. It is a long story, but we have had many doc`s to tell us that ds will be just fine...I knew there was more than that...

Here's an interesting blog entry on this topic:

On The "Mommy Instinct" and Autism

There seems to be a common cultural understanding - in the US, at least - that mothers have a special gift for knowing what their children need and for aggressively going out and getting it. Whether it's "fighting like a tigress" for a child's school placement, or just instinctively knowing that a particular event caused a child's autism, moms are credited with almost superhuman powers.

Jenny McCarthy used the term "mommy instinct" to describe how she knew exactly what was wrong with her son Evan - and how best to find and obtain the ideal treatments for his autism. But McCarthy is far from unique in her belief in special mommy insight. In fact, the idea is everywhere - and it's turning us moms into a sort of parenting superhero - assuming that we can live up to the challenge.

Not long ago, in a conversation with an acquaintance, I was discussing possible school settings for my son, Tom, who had been diagnosed with a form of autism. "But you know what he needs," she said. "you just have to advocate for him! You can make it happen!" Now, I know she meant those words to be supportive and encouraging. But to me it felt positively scary.

I DIDN'T know (and don't always know now) just what Tom needed. Would inclusion be best? What about a support class? A better aide? Maybe biomedical interventions really would help - or not!

"Just advocate?!" Short of hiring a high powered, high priced lawyer to fight not only the school district but also the county - and then hiring a full time advocate to sit in Tom's class and point out problems - advocacy wasn't going to have much impact. And since I didn't have the money (or the energy) to fight in court over the quality of a 1:1 kindergarten aide, there wasn't a whole lot I could do.

"You can make it happen?!" Um, no, I couldn't. I couldn't "cure" my son's autism, fix the American school system, or even be certain that the treatments and settings we finally DID choose were best for Tom. They seem pretty good - but who knows what would have been better? I guess only supermom would know.

At the time of that conversation, I was too chicken to say what I really felt - that I DIDN'T have that "mommy instinct" that would provide my child with all he needed. I just nodded and smiled and felt insufficient, overwhelmed, and terrified that I'd be "found out" as an ordinary, un-super mom.

Over time, I've come to the conclusion that the "mommy instinct" may be much less common than we think. Sure, we moms can tell without looking when our kids are sneaking treats. We may know that something's wrong when our child has "stomach aches" before school every day. But I just can't believe that "mommy instinct" can diagnose illness... recommend treatment... preview the future... and provide for every contingency. Any more than I can believe that mothers, by virtue of their special powers, can single-handedly advocate their children into physical and mental wellness.

After all - there's got to be room out there for the guys to exercise their "daddy instinct," right?!

Wednesday October 3, 2007

Source: www.autism.about.com

Dear Norway Mom,

Thank you for sending this story. I am very concerned about the impact of this "mommy instinct" theory (one of the reasons I started the thread), and this article does an excellent job of pointing out one of the potential downsides of convincing society that moms somehow “know” things. Taken to the extreme, I fear it could lead to moms being blamed for things that really are not their fault (if you have mommy instinct, why didn’t you know that........and do something .....).

Thanks again.

[/QUOTE]"I think that when people talk about listening to their gut, it's not about decisions like this. It's when we get a certain feeling that things are not right. That a child doesn't belong in a place or that a certain adult is not doing right by our kids."

..."There is a TON of research about what works in teaching ASD kids to speak better. "Gut" has NOTHING to do with this sort of decision. But gut does have a bearing on decisions about quality and about where your child is might be misplaced. Some decisions are not based on research. Research-based decisions are not really subject to the "gut" but decisions that are more subjective (like what's "right" for a particular child) might be. If in doubt, always go with what research shows works. Sometimes, though, it's important to listen to a badly screaming gut!" [/QUOTE]

I think that Tzoya hit the "mommy instinct" (or "parent instinct", as the case may be) on the head. I think that "daddy instinct" is certainly valid, particularly for fathers who are very involved in and with their children's lives. However, it tends to be mothers that are more bonded on subconscious levels with their children in the early years (sorry, gentlemen - but historical studies back this up), and so would be the ones first to suspect something is "not quite right." That is really where the "mommy instinct" comes into play... not being dissuaded by the technical experts (doctors, etc.) who do not know your child as well as you do.

In my opinion and experience, everyone has some protective instinct about those that they love and care for. Depending on their culture, people have been taught to listen to their "internal voices" or to discard those "primal instincts" in favor of what the established and educated experts have to say.

As I've stated before...one of the most profound pieces of advice I was ever given as a first-time expectant mother was from a pediatrician... "Read all the development and parenting books you can get your hands on, and then put them all away and trust your instincts. You've given yourself a broader base of knowledge than you started out with to draw from, and you know your child best." It's the best argument for hybridization of "mommy instinct" and "research" I've ever known...and something I pass on to every new mother I work with as a midwife. It's also applicable to other things...such as dealing with developmental delays, autism, and ultimately making the best choices for your child you can make, which is really ultimately what it comes down to.