high functioning autism

[HappyLady]

My DS is 4.5 and speech delayed.  He started getting speech services at 2.5 and was discharged at almost 4.  I don't think he should have been discharged (long story, even his speech therapist agreed) so I've been trying to get him services ever since.  I've had him evaluated for speech twice and both times was told he didn't qualify.  I think the problem with the testing, though, is that all my DS has to do is point to pictures and give one-word answers.  He's fine with that.  It's using sentences and conversational speech that he has a problem.  

 

When he was first evaluated at 2.5, I asked if he could be autistic and was told "absolutely not."  I asked all the therapists he had (he had a total of 3 over the course of getting services) if they thought he could be autistic.  They also said, "absolutely not."  I had him tested for autism when he turned 3 and he scored so low on the autism scale that they said he wasn't autistic, but they said he *could* be diagnosed with it at a later age.  

 

He doesn't have any of the typical characteristics of autism except for the speech delay.

 

When I had him evaluated for speech recently, I asked the evaluator with her experience, what did she think was the reasoning for my son's speech issues.  She said she believes he has high functioning autism.  I started researching it and my DS does have a speech delay, he is very smart (that's one thing everyone who has ever evaluated him or worked with him has said about him), and he has in the past had issues with interacting with others.  He doesn't do it anymore, but he used to annoy other kids (usually with make a repetitive noise) that would be so annoying the other kid would cry.  My DS would think it's funny and continue to do it.  That hasn't happened, though, for about a year and after I told him a few times not to do it and why, he stopped.  I've watched him playing with other kids and appears to play with them just fine now.  The only time there ever seems to be an issue is when another kid wants him to follow directions or just have a conversation because then my DS struggles.

 

So, I guess what I want to know is, if you have a child with high functioning autism, were they still speech delayed at 4.5 and when did their speech end up sounding ok?  Also, at what age were they diagnosed?  And finally, if my DS has high functioning autism, how on earth could he not qualify for speech and what other services should I be pursuing for him?  I will be getting him tested to see if he definitely does have high functioning autism, but I figured I just try to get some advice here in the meantime.  :)

[kbutton]

I can't say anything authoritative about speech and autism. I can say that friends whose kids have been released from speech but don't speak well have had to resort to recording speech at home and taking it in for evaluation. Keep in mind that they will tell you about all the sounds that a whole range of 4.5 year olds can't make, and that is part of what they are basing their decision on, and he may still need speech to keep up with development or to move to a new level. The should be testing conversational speech and such.

 

Some kids who are high-functioning or more Asperger's-like are diagnosed late. My son wasn't diagnosed with PDD-NOS until age 9. 

[Tsuga]

 

 

He doesn't have any of the typical characteristics of autism except for the speech delay....after I told him a few times not to do it and why, he stopped.  

 

I would consider going to a specialist who knows about a wide variety of speech problem etiologies. There are many language issues which are not related to ASDs and many which may be misdiagnosed as ASD. I am curious as to why you are latching on to ASD in particular when there are many causes of speech delay.

 

Getting the ASD label might be helpful short-term but as he enters kindergarten it would probably be useful to have a really accurate diagnosis for the school.

 

You had his hearing tested, right? Like in the little room with the sounds coming from everywhere, very soft, etc.?

 

 

 

 

He doesn't do it anymore, but he used to annoy other kids (usually with make a repetitive noise) that would be so annoying the other kid would cry... he has in the past had issues with interacting with others...The only time there ever seems to be an issue is when another kid wants him to follow directions or just have a conversation because then my DS struggles.

 

The thing is, he's four now, so that would have been at two-three? That is well within the range of normal. And if I'd have told my kid something was annoying she probably couldn't have stopped it. 2-3 year olds are flipping irritating. In autism the intensity is higher and/or more frequent AND it's seen with other symptoms.

 

How many 2 - 3 year olds did you see on a regular basis? What about other kids in your family? Is he your first? I don't want to dismiss warning signs but I know I thought my first kid was a disaster until I really started seeing other two-year-olds. They all act like an autistic 7-year-old would act socially, because they were all about five years behind a seven-year-old's development. It's like--all three-year-olds act like sociopaths. They just are. A sociopath is someone who basically is emotionally three. But three year olds aren't sociopaths, you know?

 

As for not following directions, this seems very normal at four. I see four year old boys have trouble with this, much more than girls. Is your son mainly having issues when girls want to have long conversations, or is this a question of, "here you take the car now" and your son is not following that?

 

ASD is like a syndrome in that there are many symptoms that show up in many other syndromes. It is ASD when they are all put together. When it's just one, it's just that thing and could have many causes.

 

SO, I think if I were you I'd strongly focus on a speech specialist and hearing specialist to ensure (a) he's hearing what he needs to hear to lay down pathways for speech, and (b) you find the cause of his being behind.

[Susan in TN]

Could it be an auditory processing disorder? Ds10 has this - his hearing is technically fine, but the messages get mixed up in his brain. It does tend to look a lot like ASD, and his speech and conversational skills were/are behind, though he has made great progress with therapy.

[HappyLady]

Could it be an auditory processing disorder? Ds10 has this - his hearing is technically fine, but the messages get mixed up in his brain. It does tend to look a lot like ASD, and his speech and conversational skills were/are behind, though he has made great progress with therapy.

 

 

I have wondered this for awhile, but I've called about 10 different people/agencies and no one will evaluate him until he's at least 5.5 (most places are 6).  So I can't, unfortunately, pursue this one until he's a bit older.

[HappyLady]

I would consider going to a specialist who knows about a wide variety of speech problem etiologies. There are many language issues which are not related to ASDs and many which may be misdiagnosed as ASD. I am curious as to why you are latching on to ASD in particular when there are many causes of speech delay.

 

Getting the ASD label might be helpful short-term but as he enters kindergarten it would probably be useful to have a really accurate diagnosis for the school.

 

You had his hearing tested, right? Like in the little room with the sounds coming from everywhere, very soft, etc.?

 

 

 

The thing is, he's four now, so that would have been at two-three? That is well within the range of normal. And if I'd have told my kid something was annoying she probably couldn't have stopped it. 2-3 year olds are flipping irritating. In autism the intensity is higher and/or more frequent AND it's seen with other symptoms.

 

How many 2 - 3 year olds did you see on a regular basis? What about other kids in your family? Is he your first? I don't want to dismiss warning signs but I know I thought my first kid was a disaster until I really started seeing other two-year-olds. They all act like an autistic 7-year-old would act socially, because they were all about five years behind a seven-year-old's development. It's like--all three-year-olds act like sociopaths. They just are. A sociopath is someone who basically is emotionally three. But three year olds aren't sociopaths, you know?

 

As for not following directions, this seems very normal at four. I see four year old boys have trouble with this, much more than girls. Is your son mainly having issues when girls want to have long conversations, or is this a question of, "here you take the car now" and your son is not following that?

 

ASD is like a syndrome in that there are many symptoms that show up in many other syndromes. It is ASD when they are all put together. When it's just one, it's just that thing and could have many causes.

 

SO, I think if I were you I'd strongly focus on a speech specialist and hearing specialist to ensure (a) he's hearing what he needs to hear to lay down pathways for speech, and (b) you find the cause of his being behind.

 

 

I'm definitely not latching onto the idea that he's autistic, but I'm just exploring it because so far, pretty much everyone has thrown their hands up with him.  They've all said he's an enigma as he doesn't fit into any one mold.  When he was younger and speech delayed, it was easier for me to dismiss it as he's young and it will come in time.  Now that he's approaching 5 (when everyone said he'd be talking normally by) I want to make sure I've done all I can for him thus far.  Being a lay person, I don't know what other reasons there are for speech delays (besides what I can Google) and when professionals are either not helpful or just taking a stab in the dark, I research it to see if I can figure something out.  As it is, I feel like no one is willing to help me at this point.  :(

 

I see what you mean about his behaviors being typical, I just brought up those few examples as those were some of the reasons why this last evaluator thought maybe high functioning autism.  I wasn't sure if they were typical or something an autistic kid could grow out of, you know?  Everything with him so far has either been "typical" or "warning signs."  I'm never really sure which way to think when it comes to him.

 

His hearing was tested and he has perfect hearing.

 

He's my 2nd (and last).  My DD was so different from him that comparing him to her brought up so many red flags, but of course I was always told you can't compare and "boys are different than girls" and "he has an older sister so that's why he's not talking," etc.  He sees kids of both sexes ranging in age from newborn to 8ish about 3 times a week at our activities.  Like I said, now he seems to play well with them, as long as he doesn't have to follow directions.  Sometimes during playtime, if the kids want to play pirates, let's say, and they want him to be the lookout (this is a made up example), he would run off instead of staying in place to look for other pirates.  The other kids would then get upset and not want to play with him.  All the other kids are doing their "duties" while mine has a mind of his own.  Know what I mean?  He doesn't do what someone wants him to do, whether it's a 3 year old telling him or a 7 year old.  Is that normal?  Is it a red flag?  I can never tell because it's still normal for a kid his age, but when I compare him to the other kids in the group, he's just different.  Then again, I do see him improving.  He's in a gym class where he listens to the teachers and seems to do as he's told (I can watch the class through a window).  But, I know he even has trouble following directions from me.  Simple ones, too.  I was standing 5 feet from a table, pointing to it, telling my DS something he was looking for was underneath it.  It took about 5 minutes of me trying to say it in different ways and never understood what I was saying.  We have examples like that happening everyday.  Simple instructions that he should understand, he just doesn't.

[wendyroo]

So, I guess what I want to know is, if you have a child with high functioning autism, were they still speech delayed at 4.5 and when did their speech end up sounding ok?  Also, at what age were they diagnosed?  And finally, if my DS has high functioning autism, how on earth could he not qualify for speech and what other services should I be pursuing for him?  I will be getting him tested to see if he definitely does have high functioning autism, but I figured I just try to get some advice here in the meantime.   :)

 

My son (a few weeks shy of turning 6) has high functioning autism (among other issues).  I was 95% sure something wasn't "right" by the time he turned a year old.  He started speech therapy at 15 months at which point he was making no speech sounds including babbling.

 

He had his first psych eval at 3.5 at which point the evaluator saw many concerning signs, but not enough for a definitive diagnosis.  The recommendation was to put my son in special needs preschool where he would get a lot of teacher support.  The school district said there was no way they were putting a three year old who could read in special ed preschool.  My son spent 6 months in a main-stream preschool, but he could not function in that environment, and on the advise of his counselor we pulled him out mid-year.

 

At 4.5 my son was still attending speech therapy, and was still fairly difficult to understand.  Strangers were able to understand ~50% of his speech.

 

My son got his second psych eval at 5.5 at which point he was diagnosed with ASD.  He still attends speech therapy because he has minor articulation problems which are exacerbated by his inability/disinclination to look at the person to whom he is speaking.

 

My son has been in counseling on and off for years, but it has never seemed helpful.  His psychiatrist is currently trying to find a new counselor who will focus on social skills lessons.  This is what we both feel will benefit him the most in his day to day life.

 

Wendy 

[hellen]

For the playing thing, only one of my three kids would follow instructions as you've described during play. One wouldn't do it because he disliked pretend play. The other wouldn't do it because she is bossy and doesn't like being on the receiving end of orders. In the play scenario you described, both would walk away as your child did. I don't see the play thing as a red flag at all.

 

There is such a huge range of normal for human behavior. Everybody has trouble interacting with another human on occasion. My bossy child is yelling at my four year old right now for not following her directions. I wish my four year would walk away.

[Trilliums]

My son was dx'd with nonverbal LD at age 7. The evaluator also told us he was also dyslexic and Aspie. Really there is some confusion over all these terms and I don't really know the best diagnosis for him. He is an older teen now so this was ten years ago. I suspect his dx would now be ASD with the changes.

 

He did have a speech delay but did not get speech therapy until he was 5, almost 6, for a variety of reasons. He had therapy for one year and his articulation issues resolved.

 

My son is very literal. We had many misunderstandings and miscommunications because he interprets things so incredibly literally. For example, when he was younger we frequently checked out audio books on CD or cassette tapes from the library. Even though they were on CD, I tended to call them all "books on tape". One time I asked him to collect the library books on tape. He told me he didn't have any. I knew he had some though! Well, turns out they were all on CD. To him he answered my question perfectly appropriately. It was very hard for him to extrapolate beyond the literal meaning of what I said. He is now much better, just from our own study of human communication. He even is very good at literary analysis, which kind of surprised me.

 

From the way you describe his interactions, I can see why you think asd. But, I wouldn't latch onto the speech therapy too much. Are there any social clubs for aspies there? This is one thing I wish I had pursued for my kids when they were younger.

[Trilliums]

Also, a book I found very helpful is "Quirky, Yes! Hopeless, No!"

 

This goes through many quirky traits aspies tend to have. It helped me understand my son so much better.

[Minerva]

I want to encourage you to go to the Learning Challenges Board and ask your question there. The folks on that board are extremely knowledgeable and kind. Hugs!

 

[Murmer]

My daughter was not diagnosed High Functioning until 5.5 and that was will A LOT of pushing from us...and everyone except her therapist didn't think she acted autistic...she was just oppositional...the ADOS did not show autism...but everyone said she was odd and unusual and not like other kids they knew....we did get a pragmatic semantic language disorder diagnosis at 4...but it took almost 4 years to get someone to believe us that is was more than just a hyper oppositional kid.  So yes it could be autism or it may not...we went to THE AUTISM Dr out here and even his team was divided 50/50 the first time they saw her...but agreed the second (when she sat in the room completely covered by a blanket refusing to interact with anyone).  Her play has always been off and is still awkward.

[Storygirl]

When you say that you are told he doesn't qualify for speech therapy, who is telling you that? Is it the school district? If so, I'd suggest an evaluation with a private practitioner. Check with your insurance; it may be covered (ours covers speech therapy with only a small copay).

 

As far as figuring out whether he is on the autism spectrum, it can be tricky. Sometimes even the experts disagree. I suggest talking to your pediatrician about your concerns if you have not already and consider getting a full evaluation from a neuropsychologist at some point. At this point, though, since he is so young, I would focus on dealing with the speech issues. There is such a wide range of what typical development can look like that his other issues could work themselves out with time and more maturity. If they persist, then a further, more detailed evaluation may be in order.

 

In our case, I always knew there was something different about my son. Always. I thought about autism and Asperger's; I knew he had sensory issues (diagnosed at age two) and always suspected ADHD. He only had a few words until age three, when he quickly began to catch up with his speech. The truth is that I could never figure him out myself, and our pediatrician, who only saw him for a few minutes once a year, didn't see the same issues that we saw at home. When I looked at diagnosing checklists on my own, I could check off a lot of things on many different checklists, yet he lacked some specific characteristics that would indicate that he was on the spectrum. It was confusing. When he was nine, we got a NP exam, and he was given a non-verbal learning disorder diagnosis (he also has ADHD and SPD). Until then I had never even heard of NVLD, but it helps to explain some of his quirkiness. I just wanted to share a bit of our story to illustrate that trying to diagnose your child yourself is tempting, but going to experts is a better way to get to the bottom of things in a useful way.

 

Sometimes parents see things that the doctors and therapists don't, so I suggest keeping a log or other records. And sometimes doctors and therapists see things that parents miss. We are so close to our children that sometimes we don't have an impartial perspective about how they compare to the "norm." Hopefully when parents and professionals work closely together, the child's needs can be met, regardless of what their diagnosis or label ends up being. Seek out some people who will listen to your concerns and guide you through things. In our case, working with a psychologist (DS was seeing her for help with his anxiety) was a big help, because she brought some things to our attention that we had not seen before and helped us navigate the system when we needed further evaluations. Keep looking for those people who want to be on your team as you look for what is best for your child.

[PeterPan]

The others are correct that the ST you receive through the ps is only to eliminate the barrier to him doing school work, NOT a medical level of therapy.  You would have to take him to a private therapist to get further coverage, and it sounds like you should.  

 

This may or may not end up ASD.  There is social withdrawal that happens as a result of the speech, so there are kids who will lose ASD characteristics or even their ASD diagnosis (yes, this happens) with continued therapy.  I had MULTIPLE people come to me saying I ought to consider getting an ASD eval for my ds, and it was right about that age (4.5-5.5).  We went really, really hard on the ST (speech therapy) and things changed.  We had him formally eval'd by a neuropsych at newly 6 and we chose a neuropsych who specializes in LDs and developmental delays.  At that point the psych said ADHD with social delays, dyslexia, etc.  

 

So I'd definitely encourage you to get more speech therapy.  Ask the therapist to give you activities to carry over at home.  My ds had shockingly low single sentence comprehension compared to his paragraph comprehension and vocabulary.  (25th percentile for single sentence comprehension, gifted level IQ and extremely high vocabulary, figure that out)  It is true he's not understanding single sentences that are spoken to him quite as well as you think, even with his astonishing IQ.  And frankly, because he's gifted he isn't interested necessarily in every single thing other kids do when we get together or try to get them to play.  And because he's socially delayed he relates better and interacts with younger kids.  So he converses as equals with the 4-5 year olds in his preschool swim class, but he's talking about things they can't do.  Make sense?  

 

Has he had an OT eval yet?  If you have sensory issues, motor planning issues, low tone, etc. you might go ahead and ask for that referral.  You could go ahead and work on getting him connected with a social skills group.  He doesn't need a formal label to participate, and it can benefit a broad variety of kids.  It was one of the things our psych told us to do.  Around here, they read a social skills book with a trained leader and then have supervised play.  But definitely, no matter what push for more ST and ask for ways to carry it over at home.  You are correct that it's not just about his articulation (which it sounds like they tested), but his overall ability to get out his thoughts.  Our therapy always has the child putting new skills into complete speech.  So we play games, but we use lots of complete language.  Who goes next? What do I do?  Roll the dice!  Don't roll a 3!  I rolled a 3, rats!  Hop, hop, hop!  I landed on a green.  Your turn Suzy, roll the dice!  And so on...  You can do that with books too.  What do I do next? Turn the page! What is this a picture of?  What is the bunny doing?  What do you think will happen next?  Just lots of intentionally eliciting sentences and thoughts, lots of repeated language structure.  

 

Now that he's learning to read (he's dyslexic), it's becoming obvious my ds doesn't understand simple things we take for granted, like the use of a pronoun like "he"...  So I have to take extra time with him, typing out every sentence for his reading onto a page and going into it, (who is doing the action, what is being said about the subject, where did it happen, what does he refer to, etc.) and then illustrating.  The low single sentence comprehension for oral speech is just as bad when he's trying to read, ugh.  

 

Murmer mentioned oppositional.  That was one of the things the psych asked about with us.  Ds definitely has opinions and tells us things, but it's not quite to unmanageable oppositional.  Ok, it's close, lol.  But we actually can get him to do the things.  He also just looked at something as obvious as "he walks into the room and talks with me."  Now granted you can have an extrovert on the spectrum, but they're going to start with really basic level social stuff like that.  There's a LOT of room for quirks, annoyances, etc. to go under the ADHD, enough that if you look at www.socialthinking.com they suggest that the social issues of ADHD can be as great as with ASD.  In other words, you want the right label, but you also have to deal with what you're seeing, no matter what the label is.  If my kid has characteristics like your ASD kid but my kid has an ADHD label instead, it's not like I don't have to deal with them.  He still needs social skills help, etc. That's why I suggested you get the help now and let the labels sort out with time.  It's not like a yes/no thing.  

[PeterPan]

PS.  Definitely come over to LC!  We have a lot of fun over there, and we don't bite!  :)