academics for 5yo with ASD

DS turned 5 end of last year. He had early recognition of letter, numbers, shapes and colors, not inconsistent with his autism diagnosis. However, his progress from there has been really slow. He doesn't seem to get some concepts that I see kids his age already knowing. At a recent test, the psychologist was unable to determine his IQ (indirect testing I think) level because of various interfering things - distractability, sensory issues etc. He also has a lot of rigidities and is somewhat closed to learning. However, he is able to sit and attend at home because he is calm, he initiates the activity. But he just doesn't understand some things like 1-1 correspondence (color the letter "a" with red) even after going over it with him. He also seems to lack some basic skills like using his pointing finger like reading, and this realization is just coming to me. I am afraid that he might be low on IQ although I don't know if someone with relatively higher IQ at a younger age can have lower IQ as they grow up. And adding in some of his other autism related issues (focus/attention, sensory issues, rigidity) I feel that he will very quickly fall behind. Would you say I should hire a tutor (which I can afford now) to work once a week for a half hour or so to work on just academic skills? I understand that it is probably not age appropriate for a normally developing child, but I feel that we will very quickly slip if we don't start addressing it now. Given his issues I feel that staying ahead is a better strategy for him so he can focus on learning in other areas when he starts kinder this fall. any btdt? any thoughts?
he currently goes to a preschool for 3 days a week (can't do 5 days because the program does not allow it) with an aide with a lot of focus on attending, sitting at a task, doing non=preffered but teacher led activities, staying in a group, listening to group instructions, socialization etc. So, this is already a lot. In addition the same team (it's an ABA company) work on play skills and the above skills at home as well. He does other things like speech, social group, OT. I know this is already a lot and I will be adding more by adding a tutor, but again, nobody is addressing his academic needs, and dad and I try to do it. But it's hard for us to be consistent about it and also don't now what may be age-appropriate and to what extent to push him. add to that the anxiety that we have while teaching is just not a good match.
again, would love to hear some perspectives. thanks!

ETA: I wanted to add that I find this troubling not just about him being to keep up, but also because it will add another dimension of behavior in the classroom - when he doesn't know something he is asked to do, instead of asking for help or even realizing that he can't do it, he will act up. On the other hand, I have seen instances where he knows what to do and is right away doing it and is enjoying the activity.

Bulkin, take this with a grain of salt as I am not an expert, not even in the field. In my view, IQ tests are NOT particularly helpful to autistic kids as any sort of reliable gauge of ability, in either direction. I think any cognitive testing can help identify areas of weakness and IQ testing can, depending on the age and what tests are given, do that somewhat. But it seems to me that kids with autism just blow these tests out of the water. The IQ test was in no way designed for the autistic mind (indeed, I don't even think it was designed for intelligence measurement, I thought it was originally a predictor of school achievement in typically developing kids). I have seen here and in IRL friends whose kids with autism took IQ tests very early in age when the test I think (??) is more limited it what it covers since kids aren't that developed in very early childhood, have gotten back reports of giftedness, sometimes extreme giftedness, and in many but not all cases that I have seen anecdotally the child later struggles as the demands ramp up, the work requires more executive function, abstract thinking, etc. I am not trying to be negative or a killjoy and I think many kids with autism have amazing gifts -- but there are often issues that prevent the translation of those gifts to academic function, daily life, work, etc. Anyway, the reason I resent the IQ test is that it seems to me parents end up more frustrated and disappointed when their child tests as gifted/high IQ and then has marked academic difficulties. I have a local IRL friend who has struggled terribly with her son's academic problems, difficulties graduating etc because she was told when he was 4 he was at a genius level and so reasonably her belief is that the school or she must have failed him and that is so hard for her to live with. :( On the other side, there is the child that cannot complete the IQ test, is not a reliable test subject and the parents get this awful news and the reality of that child's function may be much better than that score.

Anyway, I am eager to hear what people with more experience/expertise think. I would be surprised if the IQ test is even given to kids with autism ten years from now.

On the academics, I would think short bursts every day might be more helpful than a tutor once per week. If you or someone in your house could do ten minutes every day -- perhaps with some guidance from a special ed teacher or similar on what concepts/curriculum to move through -- I suspect your DS might learn and retain better. I know its hard for you and your DH but I wonder if the 10 minutes might be doable and that is 70 minutes a week total, which would be great. Good luck!!

We're not much more experienced - my 6 yo ASD kiddo is in K now - but most of the families with older ASD kids I know have not pursued IQ testing privately or through the schools at this age. I agree with sste that, from what I know, it's not going to provide useful info at this point. In school it might even limit what they offer your child - e.g. a low IQ test may mean that they argue he needs a self-contained classroom over a general education placement, where the focus will be on life skills over academics. In early elementary, I think that is just so limiting for kids who likely do have much more potential but aren't doing well on tests that aren't designed for them.

For academic tutors, is there a reason you want to go outside of your ABA team? In my experience, they can teach academic skills, and their staff are much better at working with our kids to handle the behavior aspects. They may also be able to identify what base skills may be missing to make some of the academic pieces harder for your kid. As you note - if asking for help is hard, perhaps they have ABA strategies for scaffolding that (e.g. starting with getting him to point at a red card on a table when he needs help, or green when he is ok, and working up to raising the hand, etc.?) I think adding another therapist/tutor to the mix maybe a little too much from your description of his schedule, so maybe looking closer at the current team to see what they think he may need extra academic help in, that they can incorporate into his existing therapies, would be the best start...

It's really hard to get any kind of reliable IQ score on an autistic child, especially one as young as your DS. Personally, I refused to allow IQ testing at that age, although the school did push for it. Traditional IQ tests are strongly based on verbal language skills and this is an area that most autistic individuals struggle with, especially as young children. As they get older and their language skills develop more, it may be possible to get a more accurate IQ result. Some studies have found that non-verbal IQ tests may be more appropriate for individuals with autism.

I did consent to IQ testing at his most recent triennial eval, when he was 8. But I insisted that our private psychologist do the testing and that she would use both traditional and non-verbal tests. For my DS, part of the difficulty is that traditional IQ tests are language based and non-verbal IQ tests are visually based. In addition to autism, DS has mild visual impairments. They don't make tests for people who are both language impaired and visually impaired. So we weren't expecting to get an accurate result from either test.

What we were hoping for, and what we did get, was some really useful information from the subtests. His full scale IQ (FSIQ) score on the traditional test was low, much lower than I had expected. But the psychologist explained that the FSIQ was useless, because there was so much scatter in his subtests (something like 30+ points). But the subtests gave us a lot of insight into where he struggles and where he shines. He did slightly better on the non-verbal test. But the psychologist told me that once the visual material got too detailed/complex, eye fatigue set in and DS couldn't make sense of what he was looking at.

The psychologist wrote a very thorough report on the testing for the school and explained all the issues.

The school psychologist did achievement testing with DS. Achievement testing is more like regular academic testing. Psychologists like to compare IQ tests to achievement tests. The theory is that IQ tests measure ability and achievement tests measure performance. Ideally, the scores of both sets of tests should be similar, meaning the student's performance matches his/her ability. If the IQ score is considerably higher, then the student is not performing to his/her ability, which could be a motivation issues or a sign of a learning disability. Theoretically, the achievement tests score can't be higher than the IQ test scores, because an individual can't perform above his/her ability. DS (of course) did have that mix of IQ score at the low end of the bell curve and achievement tests at the high end of the curve. The school psychologist was amazed and kept telling me his test results were "theoretically impossible". I told her that DS hadn't read her theories. She added a "savant" label to DS's profile, since that's the only way she knows to explain his scores.

Of course, the theory only has value if you believe the IQ scores to be a true and accurate measure of the person's ability. Generally, for people with autism they are not. That's the limitation of the test, not of the individual being tested.

DS is due for another triennial next year. We will do IQ testing again, although I haven't decided if I will let the school psychologist do it or have our private psych do it again. I honestly don't care about the full scale number. I'm interested to see if his sub scores change, to see where he's improved and where we still need to focus on building his skills.

My my advice to you is to not be afraid of an IQ score. I strongly suggest waiting a few years for testing to let your DS's skills develop. If and when you do go forward with testing, don't be afraid of a low score. A low IQ score doesn't not necessarily mean low intelligence. It might mean his intelligence cannot be accurately measured by the test. Don't get hung up on the full scale score AND don't let anyone else - family, teachers, doctors, therapist - get hung up on it either. Subtest scores can be a lot more valuable than the FSIQ, so focus on the information you get from those.

Regarding the issue of heavy scheduling for a young child:

When DS was in preschool (ages 3-5), he went to special ed preschool 4 mornings a week. On Friday mornings he had private speech therapy and OT, then our weekly autism playgroup. He had swim class 2 afternoons a week. We did 15-20 hours a week of at home ABA/VB therapy in the afternoons and weekends. He was exhausted by the end of the day (I was too) but we got through it. ABA/VB covered academic skills as well as language skills, motor skills, social skills, self-help skills, etc. I really love the ABLLS tracking for making sure we covered all theses areas and to set the order of teaching skills.

DS's schedule actually got lighter when he started kindergarten, because we dropped the at ABA/VB at that point. One reason was because DS was in an autism classroom that uses the TEACCH approach and we did not want to confuse him with two different methodologies. The other reason was that DH and I switched roles: he got laid off and became the SAHP and I started working full time. DH wasn't really comfortable taking the lead on the ABA/VB program. His natural way of interacting with DS is very close to Floortime, so they moved to that approach instead.

Anyway, I would see if the ABA company can work your academic goals into what they are doing.

Thank you, all for your responses. I went back to the report to take a closer look, and it says she did the Wechsler Preschool and Primary Scale of Intelligence (WPPSI). Is that the same as full scale IQ testing? Should we have refused it? This was a private psychologist that we requested for an assessment of skills and areas of need.

For the academics part, I spoke to our ABA supervisor and she understood my POV and we decided that I will work with him for the next few weeks and will take down detailed notes about how he did and what was very challenging for him. She spoke about some of the tests like ABLLS and VB-MAPP that would typically test for these skills, but she did not feel that there was any issues with cognitive functioning. Anyways, we have decided to take the route of me working consistently and discussing my observations with her and to go from there.
I was concerned a bit initially about speaking about this with the ABA team since they are not working on any academic goals. But she put to rest my fears by saying that any goal is fine to be worked on and that they can help. But of course with appropriate priorities.
Our ABA team is not following the DTT model - they do a playbased therapy with a lot of contrived situations and in the moment teaching and targeting specific behaviors sometimes with material reinforcers.

Gena, I totally hear you - DS and I are very tired at the end of each day. But I also think that this type of scheduling is important for him (I leave enough time to decompress in between sessions, of course) since I know that if given too much down time, he will not use it productively. Every moment spent with a therapist, he is not spending it with his obsessions and getting deeper into them and away from people around him. Before I sound like I am denying him access to his interests, we have set a time period in the evening after all his activities and therapies are done that he could play and talk however much he wants to about his interests and we will whole heartedly engage him. It has been working well so far because he is now being productive with them! Knowing that he has a limited amount of time with them, he makes the best use of them. And sometimes he ends up realizing that well, there is only so much I can do with this and I am done now. This was great advice from our ABA manager. this way he gets to do his thing, focus on his work during work time and not have it intrude and occupy his thoughts. And we love indulging him at the time since we know that it only lasts so long so we want to make him happy :)
back to original programming :)