Where on the spectrum?

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I've been asked before where my son is at on the spectrum (has ASD).. He will be 3 in Aug. Does that mean either High Functioning or Severe, etc.? Right now they diagnosed him with severe autism because he has very little communication/social skills. The psychologist who diagnosed him said that it could change once he learns how to talk or if he learns how to talk. It's so confusing as my boyfriend has Asperger's and wasn't diagnosed until he was 22? They won't classify my son as having Asperger's because he isn't able to talk and my bf also didn't talk until he was about 4. She said the diagnosis criteria has changed, but I don't understand if there are different types of Autism Spectrum Disorder?

As I understand it, the phrase "autism spectrum" actually covers a wide variety of mentally-related medical conditions. Severe cases would include things like cerebral palsy, while Asperger's is more toward the lower end in terms of disability...hence the new term, "high functioning". Every person is different, but from the little I've read, that description seems to be the currently-held standard by most doctors in the mental-health arena.

Autism isn't cerebral palsy, and CP itself has it's own 'spectrum', if you like.

Cerebral palsy is not included on the autism spectrum at all. That is not to say a child cannot have both, but cerebral palsy isn't on the the spectrum. Also, like autism, cerebral palsy presents in very different ways, some people with it being able to walk unaided and with comparatively less speech problems (see R.J. Mitte), and some require the use of electric wheelchairs, and have their cognitive functions affected and their speech.

To your original question, Stormymomma, the consensus is that there is not really disorder[b]s[/b], rather only one disorder. Basically the new diagnostic criteria is supposed to eliminate redundancy, and kind of silence the ongoing debate as to the difference between 'high functioning' autism, and aspergers (mostly because the consequences of such debates are that clinicians lack coherency as to who got diagnosed with autism, and who diagnosed with aspergers).

My advice in respect to your son is ignore functioning labels, especially at his age. Generally the serve to unfairly/sometimes completely unfoundedly place people in rigid categories. Call someone low functioning and you essentially say that they're too incapable to be improved, call them high functioning and you're essentially saying you're too capable to have problems. Now that is some over simplification as some people do use functioning labels with the best of intent, but unfortunately especially in regard to education, and the general public that's generally what it amounts to.

The most important thing is to look at your son as a whole person, and to identify his strengths and weaknesses. So, what's his ability to understand language like vs. his ability to express language, and if he has little/no speech is he capable of letting his needs be known? Does he use flashcards or PECS?

I regularly used flashcards to communicate until I was 14 and I'm at university now, so really don't feel like you have to push him into learning language at the expense of his ability to communicate his needs. For a real world example of this because sometimes extrapolating is hard, when I moved from a special needs school to a special education unit in a mainstream school at 9 they promoted speech only communication above and beyond what a lot of us were capable of (mostly I think now because we did art and PE with the mainstream classes and they wanted maybe the teacher or students to not have to look at pictures or cards, I don't really know the exact reason). For me this resulted in me going from 99% toilet trained (accidents very very rarely), to almost daily messing myself, and me not eating and my tics (I also have tourettes) getting a million times worse so I bruised my chest and my head and had to be restrained. Because they kept saying 'use your words', and I just could not.

So it's really important to consider what your boy is good at, and what works best for him. He's only three so you maybe haven't found it yet. And it won't necessarily be flashcards! My small cousin who is 6 now and was completely non-verbal until he just turned 5 couldn't wrap his head around using cards, they just didn't make sense to him at all. He was much more of a 'figure out what my particular arm flaps mean' kid.

And that's just the communication area, I could go on and on and on about other bits. If you need any advice about specific issues/concerns I'm sure people on the forum will be helpful to you.

My apologies; I was simply going by what my psychologist had said, as well as a bit from Tony Attwood's book on Asperger's.

Just tell anyone who asks that your son is too young for anyone to determine where he is at on the spectrum.
That's kind of an over-simplification, but it's the practical truth.

I agree with Yippy Skippy.

When we first got a diagnosis, I had a big debate with the shrink, because my son did not have speech delays and to me that meant he should have been diagnosed with aspergers. (Back then it was with the DSM IV) He insisted that his social communication and severity of other deficits meant he was HFA. The categorizing part of my brain was short circuiting and it was important to me, for aspie reasons of my own that it be "correct." I thought aspie was correct and it bothered me.

It took me a very long time to stop hyperfocusing on it. Even people on here telling me it did not matter did not help right away, b/c of how MY brain is wired. Finally I realized some of what my son does is stereotypically aspie; some of it is HFA,. He also has some other issues that resemble LFA behavior. I feel he has kinship with all of it.

It was years and the debate over the new DSM 5, that made me realize it doesn't matter what he is called as long as each issue is handled appropriately for who he is. (Yes, the wise people on here told me that long before, but it did not get through to my aspie self.) I use autistic and aspie as descriptors depending on nothing in particular at this point, though earlier on, I matched it to whichever behavior my son seemed to be exhibiting.

At the end of the day, it really does not matter. Autism, as was stated previously, is an umbrella term and while our kids all may have certain things in common, their gifts and deficits are probably caused by numerous different gene combinations. They are all unique and yet similar. That is how it is.

Edited for grammar and clarity.

Ok so high functioning, moderate or severe would be where they are on the spectrum? Ok. That was my question. I know they do things differently now than they did about 10 years ago when my bf was diagnosed.

I haven't been on forums for years, but quoting Alyosha:

I think that's a really good point. If, for instance, you say someone is low functioning, you give the impression that the individual does not have the ability to improve. Or if you say someone is high functioning than they may not get the assistance they need and could potentially become lower functioning than they may be capable of. I don't know if that made sense, but I agree there are more important things my child needs. I think he understands more than what he can tell me. He seems like a pretty smart kid. He tries to get out of therapy by whining and crying. Verbal communication is where he struggles.

StormyMomma,

Where they categorize him at 3 is not indicative of a prognosis on how he will be as an adult. It only tells you in a very general sense, where he is today. Different kids "bloom" at different times. Your child is not likely to follow a typical NT development pattern or schedule. That is about all the information you have.

I am convinced that for many kids expressive language is not a good indicator regarding recessive language. Even when a child is frugal with his words, (or non-verbal) you can often tell if he understands things. When that is the case, you never know when the expressive language will come forth in massive quantities.

Yeah, two high functioning people on the spectrum can even be the opposite in many areas. Some are hypo-sensitive and others are hyper-sensitive. Many excel in math and technical subjects, and others are highly creative. Some have coordination problems, and others are strong and athletic. Some are calm and pensive, others are the opposite. Also, the same person in different circumstances can be extremely different. For example, if you saw my son in his writing class last year and then his writing class this year, you would think he was a totally different person. If he is motivated and sees the need to learn something, he is much more highly functioning.

The term high functioning is pretty meaningless as far as I'm concerned. It probably means more for people who get services.

Here are the descriptions of the autism severity levels (taken from the proposed standards, I couln't find the official ones with a quick search). I find them a little frustrating -- but have heard people use "severe, moderate, and mild" to correspond to levels 3, 2, and 1:

So being non-verbal probably qualifies for "moderate" instead of "mild". It's not clear to me how the line is drawn between "moderate" and "severe".

Ok. Thanks for the description, Zette. There has been some improvement- I feel- since he was diagnosed. He has been seen on 2 occasions and they still consider him severe or "3". Such as he would avoid eye contact and now he seems to be making it more. He does have repetitive behavior- such as rocking back and forth or running the halls without reason- maybe just run. He has been playing with toys more. He had no interest for a while. He would rather play with cords or things that aren't toys.

^This^

My daughter was "moderate to severe" when she was diagnosed as a toddler. Today at 8, she can fly under the radar quite well. My friend's son did not speak at all until he was 5. At 8, his vocabulary and sentence structure are at least on par with his peers, and maybe even advanced.

3 is way too early to tell.

Sometimes I find answering questions like that with a little bit of humor fends them off without offending or causing a need for more explanation. You could say something like "Ask me on a different day and I'd tell you a different answer!" And then chuckle a bit. I think most people would understand that it is a non-answer and you don't wish to give an answer.

It probably is too early to tell. A lot of kids probably aren't diagnosed until they are older anyways. We noticed the speech delay first. He got into Speech Therapy and then he had the 12 month screening for autism. That's when we figured it was a possibility. Before I got pregnant, I guess I knew it was maybe more greater probability since my BF has Asperger's. I think he was diagnosed May 31st of last year.

Gonna kind of re-direct the conversation a little bit... His Pediatrician and Psychologist who diagnosed him both think he needs as much therapy as possible. How much therapy does he really need? He gets Speech & OT twice a week for about 30-40 mins. Plus Early Intervention about every other week (twice a month).

My daughter had 20 hours of services a week from just before she turned 2 until she started kindergarten. Speech, OT, PT, ABA/VB, 1:1 at preschool. Most states do not approve that much through EI, though. Don't know what your insurance situation is like.

For my daughter, the 1:1 in a school setting, followed by VB (Verbal Behavior) was probably most helpful, followed by PT, but the PT was for severe in-toing, not ASD.

He is on Medicaid. I thought his pediatrician said 40 hrs/ week he would like him to have. But I guess that is a little extreme? Or maybe he meant also ABA or something as well. Not sure.

They do recommend 40 hours a week, but in the past they also recommended that you smoke, and other things we don't necessarily agree with now.

Having been the kid in that situation, I would heartily recommend against more than 20 hours a week.

It's exhausting enough for adults to work a 40 hour week, let alone a child doing that *on top of school*.