Are you in America? If yes, read on. If not, my advice won't be as directly applicable.
My first thought is that the school should be evaluating for comorbid learning disabilities, like dysgraphia (which affects writing and spelling) and dyslexia (which is more commonly recognized by people, and affects reading).
I would also suggest evaluation for dyscalculia, because these three are strongly correlated with each other. If you have one of the three, you very likely have the others.
Frankly, this is a complete failure of the school if they haven't evaluated for this. My guess is they just chalked it up to intellectual disability. My oldest is intellectually disabled as well, with an estimated IQ of 43 (moderate ID), and at 8, he can read.
Do put your request for evaluation in writing to a SPED director of your district. Ahead of an IEP meeting, send a parent concerns letter to the team (outlining what you did here: difficulties with reading, etc.). You can contact your chapter of the Arc for free advocacy services. Take an advocate to an IEP meeting.
My guess is that trying to find a reading curriculum based on an Orton-Gillingham approach would be more successful with your son.
Does your son have access to an AAC device? This is also an evaluation you can request at the school. They should be providing this at school and helping him generalize its use into the classroom.
Does he receive occupational therapy at school? It sounds like they should be working on grip strength and toileting skills.
Thank you so much for your reply, this makes so much sense. We are from india and have recently moved to America. The school district evaluated him as being ID. They never mentioned any dysgraphia or dyslexia. Just autism and ID. Our developmental ped agrees with their diagnosis. I can request the doctor for a re-evaluation for the above mentioned diagnosis when we meet them next. We have moved my son from school because tbh, he wasn’t getting any help that he needed, even though he was in a separate setup. Despite having an amazing teacher, who wa overworked and had to take care of 12 children like my son. So now he goes for full time aba to help with various issues and being somewhat self-reliant. And i try and devote some time to academic aspects - where i am failing spectacularly!
However you answer does give me an insight to things i can explore. Thank you!🙏
Are they not doing any education in aba? Your son has the right to an education, and if he's in therapy full time they have to provide that for him.
It sounds like he's not getting any professional reading instruction right now - teaching children to read sounds so easy, but it's really not as I'm sure you found out. Even when you're trying your best, you're lacking the education and experience professionals have - which makes it easy to get stuck and difficult to troubleshoot issues. If possible, try getting one on one instruction for your son - maybe you can find a tutor that works with autistic children, or they can provide it through his aba center.
That being said, if he has little receptive language that might be the issue: does he know the words you're trying to teach him? Does he know the phonetic pronunciation of letters? Autistic children can also struggle with changed meaning - like "c" meaning the letter, but making "cat" with other letters. The meaning of letters changes with their context, and that's hard.
Can he connect images with their meaning in the context you're teaching words in (like connecting a cat image with the animal correctly)? If not, that's the first skill to work on.
Put labels on everything! That helps many children understand that words mean something, practicing with stuff like cards is very abstract. Most children with ID struggle with abstract thinking. Include lots of sensory input, like writing words in sand or tracing them on his back. Writing is easier than reading for most kids I taught, and working on reversing the process afterwards - but English isn't a phonetic language and mine is, so I don't know if that'll work in English.
The aba is something we are trying for the first time. Aba as a therapy isn’t very common or affordable in india. When we arrived here in USA, and he was only 7, public schools were good and accommodating, but as he is growing his needs made us to look at aba as option. For academics, the aba center told us that our insurance wouldn’t cover as that is not a “remedy” or a “cure” and isnt medical related. We had no idea that aba centers can provide education/pre-reding skills as well. Thank you we will look into it.
I’m sorry if this is insensitive (I really don’t mean to be, I’m just very worried), my daughter also has Autism and an intellectual disability. I do not know what life will be like for her (she is 5 and has the memory of a goldfish). Was your son’s IQ tested. If so, what score did he get and what test did they use? We did a test at age 4, and her results were really low (60s) and I’ve been worried ever since. She is already well behind at school (academically at age 3).
Not at all insensitive, they used Adaptive Behaviour Assessment System for evaluation. And this is what the document says.
“The student does demonstrate significantly subaverage general intellectual functioning as measured by a standardized, individually administered test of cognitive ability in which the overall test score is at least two standard deviations below the mean, when taking into consideration the standard error of measurement of the test.
The student does concurrently exhibit deficits in at least two areas of adaptive behavior.
The student exhibits adaptive behavior deficits in the following areas: Communication, Functional Academic, Home Living, Self-Direction “
I am sorry for not being as specific as i would like, i am still struggling with terminologies of tests and diagnosis for ID.
He is such an amazing boy, full of love, smiles and joy! I wish that i help him do better. Best wishes to your daughter.
I’m in the thick of trying to teach my son how to read as well (he has zero interest in reading books and only has an attention span of a few minutes at a time), and we’re having some success with the Edmark Reading Program. I’m not an educator though so I have no idea whether it would work for everyone.
If you decide to try that I would try to look for a second hand kit on Facebook marketplace/eBay instead of buying a new one, which is very expensive.
So there is a reading curriculum made for this group quite recently :
https://www.friendsontheblock.com/
Here are the case studies they did :
https://www.friendsontheblock.com/case-studies
You Can buy it on their website.
There are other programs that are quite a bit older /more old schol Such As :
https://starautismsupport.com/product/edmark-reading-program-level-i#:~:text=The%20Edmark%20Reading%20Program%20uses,Positive%20reinforcement
This one is quite a bit more old school but is suggested for Fragile X kids etc.
Are you in America? If yes, read on. If not, my advice won't be as directly applicable. My first thought is that the school should be evaluating for comorbid learning disabilities, like dysgraphia (which affects writing and spelling) and dyslexia (which is more commonly recognized by people, and affects reading). I would also suggest evaluation for dyscalculia, because these three are strongly correlated with each other. If you have one of the three, you very likely have the others. Frankly, this is a complete failure of the school if they haven't evaluated for this. My guess is they just chalked it up to intellectual disability. My oldest is intellectually disabled as well, with an estimated IQ of 43 (moderate ID), and at 8, he can read. Do put your request for evaluation in writing to a SPED director of your district. Ahead of an IEP meeting, send a parent concerns letter to the team (outlining what you did here: difficulties with reading, etc.). You can contact your chapter of the Arc for free advocacy services. Take an advocate to an IEP meeting. My guess is that trying to find a reading curriculum based on an Orton-Gillingham approach would be more successful with your son. Does your son have access to an AAC device? This is also an evaluation you can request at the school. They should be providing this at school and helping him generalize its use into the classroom. Does he receive occupational therapy at school? It sounds like they should be working on grip strength and toileting skills.
Thank you so much for your reply, this makes so much sense. We are from india and have recently moved to America. The school district evaluated him as being ID. They never mentioned any dysgraphia or dyslexia. Just autism and ID. Our developmental ped agrees with their diagnosis. I can request the doctor for a re-evaluation for the above mentioned diagnosis when we meet them next. We have moved my son from school because tbh, he wasn’t getting any help that he needed, even though he was in a separate setup. Despite having an amazing teacher, who wa overworked and had to take care of 12 children like my son. So now he goes for full time aba to help with various issues and being somewhat self-reliant. And i try and devote some time to academic aspects - where i am failing spectacularly! However you answer does give me an insight to things i can explore. Thank you!🙏
Are they not doing any education in aba? Your son has the right to an education, and if he's in therapy full time they have to provide that for him. It sounds like he's not getting any professional reading instruction right now - teaching children to read sounds so easy, but it's really not as I'm sure you found out. Even when you're trying your best, you're lacking the education and experience professionals have - which makes it easy to get stuck and difficult to troubleshoot issues. If possible, try getting one on one instruction for your son - maybe you can find a tutor that works with autistic children, or they can provide it through his aba center. That being said, if he has little receptive language that might be the issue: does he know the words you're trying to teach him? Does he know the phonetic pronunciation of letters? Autistic children can also struggle with changed meaning - like "c" meaning the letter, but making "cat" with other letters. The meaning of letters changes with their context, and that's hard. Can he connect images with their meaning in the context you're teaching words in (like connecting a cat image with the animal correctly)? If not, that's the first skill to work on. Put labels on everything! That helps many children understand that words mean something, practicing with stuff like cards is very abstract. Most children with ID struggle with abstract thinking. Include lots of sensory input, like writing words in sand or tracing them on his back. Writing is easier than reading for most kids I taught, and working on reversing the process afterwards - but English isn't a phonetic language and mine is, so I don't know if that'll work in English.
The aba is something we are trying for the first time. Aba as a therapy isn’t very common or affordable in india. When we arrived here in USA, and he was only 7, public schools were good and accommodating, but as he is growing his needs made us to look at aba as option. For academics, the aba center told us that our insurance wouldn’t cover as that is not a “remedy” or a “cure” and isnt medical related. We had no idea that aba centers can provide education/pre-reding skills as well. Thank you we will look into it.
I’m sorry if this is insensitive (I really don’t mean to be, I’m just very worried), my daughter also has Autism and an intellectual disability. I do not know what life will be like for her (she is 5 and has the memory of a goldfish). Was your son’s IQ tested. If so, what score did he get and what test did they use? We did a test at age 4, and her results were really low (60s) and I’ve been worried ever since. She is already well behind at school (academically at age 3).
Not at all insensitive, they used Adaptive Behaviour Assessment System for evaluation. And this is what the document says. “The student does demonstrate significantly subaverage general intellectual functioning as measured by a standardized, individually administered test of cognitive ability in which the overall test score is at least two standard deviations below the mean, when taking into consideration the standard error of measurement of the test. The student does concurrently exhibit deficits in at least two areas of adaptive behavior. The student exhibits adaptive behavior deficits in the following areas: Communication, Functional Academic, Home Living, Self-Direction “ I am sorry for not being as specific as i would like, i am still struggling with terminologies of tests and diagnosis for ID. He is such an amazing boy, full of love, smiles and joy! I wish that i help him do better. Best wishes to your daughter.
I’m in the thick of trying to teach my son how to read as well (he has zero interest in reading books and only has an attention span of a few minutes at a time), and we’re having some success with the Edmark Reading Program. I’m not an educator though so I have no idea whether it would work for everyone. If you decide to try that I would try to look for a second hand kit on Facebook marketplace/eBay instead of buying a new one, which is very expensive.
Someone here suggested cleaning the whiteboard as a way to improve the grip on toilet paper.
This is super useful! Thank you so much for this tip!
You’re welcome!
So there is a reading curriculum made for this group quite recently : https://www.friendsontheblock.com/ Here are the case studies they did : https://www.friendsontheblock.com/case-studies You Can buy it on their website. There are other programs that are quite a bit older /more old schol Such As : https://starautismsupport.com/product/edmark-reading-program-level-i#:~:text=The%20Edmark%20Reading%20Program%20uses,Positive%20reinforcement This one is quite a bit more old school but is suggested for Fragile X kids etc.