I need the experts on autism.....

[HappyLady]

My DS turned 3 a few months ago.  At 2 years old his pediatrician was concerned that he wasn't where he should be with his speech.  I wasn't too concerned at the time, but at 2.5 I had him evaluated.  He was saying a lot of words, just not sentences.  Anyway, we had 3 people come to evaluate him at one time.  After the evaluation was done we asked them if our DS was autistic.  All 3 in unison said, "Absolutely not."  They convinced us he was just speech delayed.  At 3 he had to get evaluated again.  Again, he had 3 different people evaluating him.  One of them was concerned that he could be autistic so she wanted her supervisor to evaluate him.  The supervisor evaluated him and he said at that time my DS wasn't on the spectrum, but he could be placed there in the future.  He gave the example that if you had 200 kids on the spectrum and placed my DS in there, almost all 200 of the kids would show more signs of being on the spectrum than my DS.

 

My DS has had two therapists (one special ed and one speech) coming to our house since May.  Both of his two original speech therapists don't think he's autistic at all and think he just has a speech delay.  They do agree that there could be something else with him (maybe sensory issues) but definitely nothing that puts him on the spectrum.

 

I changed my DS's speech therapist and this new one has been working with him for about 2 months now.  She told me today that he has "soft characteristics" of someone on the spectrum and she referred to my DS as being on the spectrum.  She said her reasoning was his fascination with numbers and letters (he's known them since a very young age and he likes to point them out) and his processing abilities.  The example she gave was that if you asked him to get you an orange he would get it, but if you said you'd really like an orange he wouldn't understand it and wouldn't get you the orange.  I agree with that in that I have to phrase things a certain way for my DS to understand, but would most 3 year olds understand that way of asking for something?

 

What I'd really like to know is, how can my DS go from having 3 experts say emphatically that he's not autistic, to one person thinking he might be, to two more people who say absolutely not, to another one who put him on the spectrum?  I know he's young for an official diagnosis, but can autism be so mild that one person might diagnose him with it and another not?  And if that's the case, who do you believe?  Or since he's so young should I not even go along with any diagnosis until he's older?  Then at what age do I just go with what the experts say?  

 

I'm just so confused by all the different opinions on this.  :(

[SKL]

Well, for one thing, the definition has changed over time, including recently.

 

Secondly, they haven't all observed your son at the same time, doing the same things.

 

Thirdly, they probably don't all have the same skill, experience, and intuition for this type of diagnosis.

 

I hope you get to the bottom of your son's issues, so you can get more help in reaching his potential.

[SproutMamaK]

First of all, 3 is not young for an official autism diagnosis. That's average, if not a little late for a child who's already spent quite a lot of time being evaluated and worked with frequently. Not that there's anything WRONG with being diagnosed past 3, but they're quite used to making evaluations of kids that age (and younger), and so would be unlikely to miss something.

I can't say I agree with your new therapist's opinions at all. Lots of 3 year olds are fascinating with letters and numbers. It's a pretty cool thing for them to be learning at that age; like the mose awesome puzzle EVER that unlocks a whole new part of the world. It's certainly not a uniquely autistic trait. As for him not understanding that some action is required/requested unless it's specifically spelled out for him.... how many threads have we seen on this board with HUSBANDS who have this problem?  :lol:   I certainly wouldn't a expect a three year old to extrapolate that sort of subtle conclusion from a comment like that. There maybe something more than that behind it, but if those are the only reasons she gave, I wouldn't be concerned.

This is my honest opinion after going through almost a decade's worth of therapists and evaluations... sometimes therapists get so used to dealing with problems that they begin to see issues  and look for patterns even when there are none. Is she a newly trained/young therapist? In my experience, they are often much more likely to sees symptoms of something they've studied (sort oflike what we Moms get liked after looking up symptoms on WebMD, lol). I'm not saying you shouldn't trust your therapist, but there's a reason that one type of therapist on their own doesn't make a diagnosis. Even WITH a specialist in any field, take their opinions with a grain of salt and trust your instincts.

[JustEm]

My DS turned 3 a few months ago.  At 2 years old his pediatrician was concerned that he wasn't where he should be with his speech.  I wasn't too concerned at the time, but at 2.5 I had him evaluated.  He was saying a lot of words, just not sentences.  Anyway, we had 3 people come to evaluate him at one time.  After the evaluation was done we asked them if our DS was autistic.  All 3 in unison said, "Absolutely not."  They convinced us he was just speech delayed.  At 3 he had to get evaluated again.  Again, he had 3 different people evaluating him.  One of them was concerned that he could be autistic so she wanted her supervisor to evaluate him.  The supervisor evaluated him and he said at that time my DS wasn't on the spectrum, but he could be placed there in the future.  He gave the example that if you had 200 kids on the spectrum and placed my DS in there, almost all 200 of the kids would show more signs of being on the spectrum than my DS.

 

My DS has had two therapists (one special ed and one speech) coming to our house since May.  Both of his two original speech therapists don't think he's autistic at all and think he just has a speech delay.  They do agree that there could be something else with him (maybe sensory issues) but definitely nothing that puts him on the spectrum.

 

I changed my DS's speech therapist and this new one has been working with him for about 2 months now.  She told me today that he has "soft characteristics" of someone on the spectrum and she referred to my DS as being on the spectrum.  She said her reasoning was his fascination with numbers and letters (he's known them since a very young age and he likes to point them out) and his processing abilities.  The example she gave was that if you asked him to get you an orange he would get it, but if you said you'd really like an orange he wouldn't understand it and wouldn't get you the orange.  I agree with that in that I have to phrase things a certain way for my DS to understand, but would most 3 year olds understand that way of asking for something?

 

What I'd really like to know is, how can my DS go from having 3 experts say emphatically that he's not autistic, to one person thinking he might be, to two more people who say absolutely not, to another one who put him on the spectrum?  I know he's young for an official diagnosis, but can autism be so mild that one person might diagnose him with it and another not?  And if that's the case, who do you believe?  Or since he's so young should I not even go along with any diagnosis until he's older?  Then at what age do I just go with what the experts say?  

 

I'm just so confused by all the different opinions on this.   :(

  

I can't help you with your other questions but, in my opinion, most 3 year olds would not assume you were asking them to get you an orange if you simply said you would like one.  My 3 year old might say something along the lines off, "ok" or "me too" or "I don't want one" or "then go get one." I think my 5 year old would even tell me to go get one, if he's feeling particularly sweet he might offer to get one for me but wouldn't just go and get one without specifically knowing I wanted him to do that.

 

I wouldn't even get someone an orange if they said that.  I'd reply, "would you like me to get you one" or "they are on the counter, feel free to have one."

[wapiti]

You might ask on the special needs and/or learning challenges boards.  Nothing you wrote would bother me personally (having had three late talkers with sensory issues), but I am not an expert.

 

I would not put much stock in the opinion of a speech therapist.  While they may happen to see a lot of spectrum kids, they are NOT diagnostic experts by any means!!  A speech therapist cannot diagnose an autism spectrum disorder, period.  If you are concerned, arrange a proper evaluation with a neuropsych or developmental pediatrician.

[kbutton]

Well, for one thing, the definition has changed over time, including recently.

 

Secondly, they haven't all observed your son at the same time, doing the same things.

 

Thirdly, they probably don't all have the same skill, experience, and intuition for this type of diagnosis.

 

I think these are reasonable explanations for the different responses, though that doesn't give you any idea of whose evaluation is correct.

 

I encourage you to take notes, including dates. Read up on autism and speech issues for yourself to see where there is overlap. Wait to see how he is later on down the road. See if you notice other behaviors that concern you for any reason. See if the checklists resonate with you.

 

No two kids with autism are going to look alike. Knowing a child with autism and comparing them to an undiagnosed child leads to a lot of "that one doesn't have it because he doesn't do x, or because he does do y." Sometimes that is correct, and sometimes it's not. My son was diagnosed with Asperger's at age 9. Some people were shocked; others not so much, but no one had actually suggested he might fit the criteria. Sometimes the only difference between a neuro-typical kid and a child with a diagnosis (of any kind, not just autism), is how frequent and intense certain behaviors are. Obsessions and problems with language can be red flags, or they can be obsessions and problems with pragmatic language. ;-)

[MrsMommy]

I can only share my personal experience, which is somewhat similar. My younger son wasn't talking at 2 1/2 (at all, so he was obviously struggling more than your son), and I got him help through early intervention. All of the therapists that saw him (a total of five, I think), thought maybe he had SPD at the worst, but they were all certain that he wasn't autistic. When he saw the pediatric neurologist, however, she was with him for only a few minutes before being able to diagnose him.

 

I'm not saying that the way she identified his differences was the right way, or that this was a typical way to receive a diagnosis. But, I went from nobody thinking he could possibly have autism, to a doctor giving a very definite diagnosis. Even after, his teachers and therapists were a little surprised by it, because he doesn't have a lot of the classic symptoms. In the end, though, I think it's an accurate diagnosis, and it really drives home the point that autism is a spectrum disorder...it can look very different from one person to another.

[albeto.]

What I'd really like to know is, how can my DS go from having 3 experts say emphatically that he's not autistic, to one person thinking he might be, to two more people who say absolutely not, to another one who put him on the spectrum?

 

Autism is understood by a compilation of specific behaviors. Behaviors are often subjectively determined, though. The diagnosis process seeks to objectify this observational component as much as possible, but at the end of the day you're still dealing with individuals who interpret what they saw. Also, not all professionals are equally clever. Some have the kind of insight that makes you think they could probably walk on water if they decided. Some will make you shake your head and wonder if they got their degrees from a trinket dispenser outside Toys R Us. It depends on what their education is, their level of experience, and the cleverness of those who mentored them. So, yeah, you're likely to find a variety of opinions. I don't recall which tests are given any more (it's been too many years for me and my brain has turned to mush), but there are some standard evaluations that should be more helpful than others. An occupational therapists opinion, for example, may or may not be so accurate, but a certain score on the WISK test (or whatever it is), should be indicative of a pretty intensive evaluation. Having said that, my son was tested by a leading facility in the nation and they all but missed it. How they could is beyond me, but there you go. I know because, like you, I learned what was going on in my son's head. But I also had extensive evaluations done before. The first evaluations confirmed what I'd seen and experienced, the second one missed them, so I trusted the first professionals more. That's not to suggest professionals don't know what they're doing, but to suggest that you'll become more of an expert on your son than anyone else, and you'll know who you want on your "team." Right now, you're just learning, but you'll get there. 

 

I know he's young for an official diagnosis, but can autism be so mild that one person might diagnose him with it and another not?

 

He's not young for an official diagnosis, but you are enormously lucky to have caught it now. Many people who present mild autistic behaviors aren't identified as having such until they are older. Ten years old isn't unusual for mild autism/asperger's, and adults are finding out all the time after having learned to navigate a world of social expectations that never did seem logical. And yes, he can have very mild autistic traits, but just enough to present challenges that you can help him identify and rectify as he matures. 

 

And if that's the case, who do you believe?  Or since he's so young should I not even go along with any diagnosis until he's older?  Then at what age do I just go with what the experts say?

 

The more you learn, the more certain explanations will conform to your experiences. It might take longer for you to really see what's going on because it's closer to what others at his age might do. As he gets older, chances are his challenges will be more easy to identify. The more you work on them now, the less he'll have to unlearn and relearn when he's older. It's not unusual to work with a number of therapists until you find one that really works well with your family. 

 

I'm just so confused by all the different opinions on this.   :(

 

I know it seems like there's so much to face, but you've got a long time ahead of you to really analyze what's going on. You've got time on your side, and you've got a heads-up to pay attention to the kinds of details most parents don't think of noticing. You'll change your mind a million times, and come back to theories you've dismissed again, and again. It's okay. It's a process and there's no rush. If there is any piece of advice I could give, it would be to learn to read his behavior as trying to solve a problem he has with the best tools he has. All too often people interpret the inappropriate behavior of their kids as being willfully naughty. Not only is this unjustified, it distracts one from identifying the real problem and coming up with a solution. If instead you imagine his behavior as a language, and inappropriate behavior as using the wrong word or syntax, then you might see the value in correcting him as well as helping him get through it, rather than punishing him as if he knew better.

 

Best of luck to you. You're starting this journey in an age where people know you're not making it up, spoiling your child, or are "unparenting." You'll figure this out as you go along. Give yourself permission to not know, to explore, to wonder, to ponder, to postpone deciding, to protect your child from things that will hurt him.

 

:)

[sbgrace]

Well, I had multiple therapists insist my son wasn't on the spectrum. Even an autism specialist mis-diagnosed. I believed him because I wanted to, but I should have realized when he told me "look, he's smiling at people and making eye contact" that he wasn't accurately assessing. He was eventually (at around 3) diagnosed by two autism specialists--one at our Children's hospital and one in private practice. I hired the private practice myself because I wanted a second opinion. I was so confused at the time by he isn't, he is. That evaluator was very good at showing me exactly why she was diagnosing. He was on the spectrum all along. Some people have things like poor eye contact, lack of pretend, repetitive behavior or similar in their minds and miss autism that doesn't look like their ideas. This is what happened to my son.

 

A professional who specializes in autism evaluation should be able to say definitively or not at his age. You want someone with experience, who evaluates more mildly affected children. For our second opinion, I called the local autism parent's association and similar--asking for someone who could evaluate for a more mild presentation in a young child.

 

A therapist shouldn't be making a proclamation about this area one way or the other, even when directly asked. They aren't trained to assess. I can't tell from what you wrote if the people doing these evaluations were autism experts sent for that purpose or early intervention type teams. I'm gathering they were speech people? They shouldn't have answered your questions, if that is correct.

 

Some things: does he communicate nonverbally well? Does he wave, shrug his shoulders, nod his head yes/no, etc? Does he point things out to you that he would like you to see and then look at your face for reaction? When he is unsure of something, does he look to someone he trusts to see if the whatever is ok? Does he respond consistently to his name? Does he seek to involve others in his play (not just seeking reactions to his play or wanting them to join his idea, but seeking out and adding their unique ideas for example)?

 

This is a free online assessment. It doesn't take long, and will show some of the things an evaluator would be assessing. More mildly affected child will have less signs and less severity within the signs. You can see why she mentioned the letters/numbers when you look at that assessment. My son did the same thing FWIW, and the first and only therapist who pointed out to me that his love of letters and numbers might be an autism sign mentioned that specifically. I threw up when she left and then convinced myself she was wrong because everyone told me he was fine. Well, she was right. That doesn't mean, though, that this is the same case with your son. There would be more than just that of course. But she's right that it is seen in spectrum kids.

 

My son didn't have a lot of the things on the list, and definitely wasn't at all many of them. I think that's why he was missed by people who thought they knew what autism looks like.

 

If you see none of it beyond that one thing, I would assume the woman didn't know what she was saying. If you see more signs, a formal evaluation is worth it. Find someone good at evaluating young children who are more mildly affected. If it is autism, it's better to know now.

 

 

 

 

 

[jelbe5]

You have received many good answers. I want to offer hugs and support. I knew my son was on the spectrum before anyone else gave us a dx. Some professionals are reluctant to give the dx and, as others have stated, the criteria has changed. When my son was being evaluated only a medial doctor could give the definitive dx. Others could provide input and assessments but could not give the official diagnosis.

 

Have you met with a developmental pediatrician or neurologist? If not that may be the next step - even then there may be a difference of opinion. Seek someone with knowledge/experience in delays/spectrum disorders. Best wishes, and please keep us updated.

[mrbmom77]

I haven't read all the responses, but I will say that SLP's are not qualified to diagnose autism. Many of them know a good deal about and treat many autistics - my own son was referred for further evaluation by a SLP - but only a psychologist or psychiatrist can make a diagnosis. If you have concerns, my advice would be to get a referral to a child psych who has extensive autism experience. Good luck!

[Ivey]

While 3 is probably a little late to diagnose severe autism these days, milder cases are not typically diagnosed until several years later. Two of my boys have been diagnosed with ASD - Ds9 with autism before his 2nd birthday and Ds16 with Asperger's at age 7. At the time, our doctor considered 7 to be on the early side for an Asperger's diagnosis, but I think that would be about average now. Ds16 did have a mild speech delay, but ASD was not suggested until he began having difficulty in public school. You're really ahead of the game to be looking into mild ASD so early.

 

I don't agree at all with your new speech therapist's assessment. The previous posters are absolutely correct that she is not trained or qualified to diagnose autism. Her understanding of theory of mind (which is what she's getting at with the orange example) is not accurate. Typical children don't reliably demonstrate theory of mind until age 4 or 5, so it's no wonder that your 3yo hasn't yet developed the ability to understand another person's beliefs or desires. His fascination with numbers and letters could be a symptom of ASD, but maybe he's simply had more exposure to numbers and letters than most kids she sees? You are a better judge of this than the speech therapist, who only sees him in one setting for a couple hours a week.

 

If it were my child, and I did not have any specific concerns other than what you've mentioned, I would try not worry about a diagnosis for another year or two. If other issues come up or you feel he needs more services, absolutely seek an evaluation, but otherwise I would continue with the speech therapy and just keep a close eye on his behavior, interests and social interactions. 

 

Good luck!
Ivey

[NorthwestMom]

Agreeing with what others have said. Do not take one SLP's opinion to heart.  I have worked with bunches of SLPs professionally, have a friend who is an SLP and my own sister is an SLP. Quality and knowledge base varies. If you are worried, get a real evaluation done by a specialist.

 

Although - and this is only my opinion - I personally believe that Spectrum disorder is easily over diagnosed these days just like ADHD can be. One or two shared symptoms of a disorder does not qualify a diagnosis. Try to be level-headed and calm around this.  :grouphug:  :grouphug:

[Caclcoca]

My oldest ds was all over the board too. He had almost no words at 2.5 years old. We had him tested for autism right before his fourth birthday, and they couldn't diagnose him. He was boarder line in some areas, but not close to the spectrum in others. We received his Aspergers diagnosis 3 months before his tenth birthday. He was was/is so high functioning in some areas that it took awhile for his issues to become more obvious.

[Murmer]

I had multiple people tell me my child was not spectrum...she didn't even qualify for early intervention at 2.5...but by 3.5 was instantly on an IEP for how far behind she was...multiple people mentioned language issues but none could actually pin point a problem...at 4 the autism team at our local hospital could not agree on a diagnosis...at 5 we were given a provisional High Functioning Autism diagnosis...August was an official diagnosis....this December the school district reevaluated her and the independent psych determined my dd qualified under the DSM 5 with mild/moderate ASD.  

 

This is to say that you just have to follow your gut...if you feel the services are helping your child and that the progress is what you want then what does a label matter...if you feel like you are still circling around a problem and not getting the help needed then keep pushing for someone who will really listen and knows what they are talking about and don't stop until you find peace whether that is with or without a diagnosis of ASD.

 

Oh and totally get a second opinion I didn't fully believe the diagnosis until this dec when an independent person also said yes she is ASD (because so many people didn't seem to think she did).

[Alexigail]

I want to mention that although autism diagnosis is happening earlier all the time, the average age is still about 4 years old and even later for kids with a milder form:

 

http://www.cdc.gov/ncbddd/autism/data.html

 

I'm saying this because people have mentioned in this thread that 3 is late.  It's not.  I got some side-eye from a social worker over our "late" diagnosis, when it was really well within the average and it was hurtful at the time.  

 

I agree with others who have said that a speech therapist has no business diagnosing autism or giving their opinion on it.  

 

Hang in there, OP.  This period of trying to identify problems is rough.  My son is on the "milder" side of the spectrum and it was a very long time from suspecting it (2 years old) to having a diagnosis (almost 4 1/2).  Our psychiatrist also said that he will reevaluate at about 7 or 8, so it's an ongoing (and frustrating) process.  In the meantime, there are a lot of resources out there to work on developing speech and addressing other areas of concern.  

 

Hugs.