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Disparities in Intellectual Disability in Autism Spectrum Disorder: A call for the immediate need for more resource

Smart cookieBelow is an article from the TACA Moving Forward Autism blog that is critically important. I recall asking every school psychologist, "How can you measure her IQ if she can not respond to the test?" My daughters each “tested” as having intellectual disability. And while that horrifed me, because I KNEW that they are smart and capable, at the end of the day, it's the "credit card" that "buys" services across the country. Departments of Disability Services, once called Departments of Mental Retardation, were created to service those with IQ under 70.  People with autism are denied services and put on waiver wait lists in droves if their IQ is over 70. On paper. But do our kids really have IQs under 70? Or, have states caught on to the crushing expenses coming because of autism, therefore they need a way to deny services? I think the SPELLING REVOLUTION is going to make a difference in getting honest data. Maybe some savvy psychometry student will create an IQ test that uses spelling to convey answers. And discounts motor planning skills.  Thanks to TACA for this information. Do bookmark their blog.

Disparities in Intellectual Disability in Autism Spectrum Disorder: A call for the immediate need for more resource

Richard E Frye, MD, PhD
Autism Discovery and Treatment Foundation, Phoenix AZ
Rossignol Medical Center, Phoenix AZ

A new publication in the journal Pediatrics examined the change in rates of autism spectrum disorder (ASD), particularly with respect to those with intellectual disability (Shenouda et al., 2023). This study was performed by examining data collected as part of the CDC – Autism and Developmental Disabilities Monitoring Network in four counties in New Jersey which represented a diverse population in the New York-New Jersey Metropolitan Area over a six-year period from 2000 to 2016. Not surprisingly, the overall ASD rates increased but particularly interesting was that fact that there was an overall increase in the proportion of children with ASD who did not have intellectual disability. However, there was a greater proportion of children with ASD without intellectual disabilities in more affluent areas while there was a relatively greater portion of children with ASD who also had intellectual disability in underserved areas with low socioeconomic status. The authors believe that this disparity was due to the underdiagnosis of children without intellectual disability in underserved areas due to lack of early diagnosis and treatment. Of course, this is an important reminder of the health disparities that affect the effective care of children.

One of the limitations in this and other research examining intellectual disability is ASD is the ability to measure intellect. I have many parents with children in my practice that tell me how smart their children are despite having an evaluation that suggest intellectual disability. There are many reasons for this. It is well known that intelligence quotient (IQ) tests have a high language load, meaning that having language problems will underestimate intelligence. Indeed, older studies suggests that a standard IQ test would categorize 20% more children with ASD as low functioning (Dawson et al., 2007) or underestimate IQ by 21 points (Grondhuis and Mulick, 2013) and more recent studies have supported this notion (Al-Mamari et al., 2021; Giofrè et al., 2019). Furthermore, the reduced ability to communicate non-verbally with gestures, the limited ability to pay attention and behavioral dysregulation can all interfere with intelligence testing, thus underestimating intelligence. Interestingly, a recent functional MRI studies looking at brain pathways with children with ASD found that many children with ASD had the required language and cognitive pathways intact in the brain, but for some reasons they weren’t utilize these brain pathways, leaving them in a “locked-in” state (Pines et al., 2021). Perhaps there is someway to unlock this cognitive potential.

Research into how to communicate with children with ASD who have communication difficulties is lacking. These techniques for improving communication don’t have to be high tech. For example, the intelligence and creativity of many children with ASD has been revelated utilizing a low-tech alphabet board for spelled communication. Many states do not fund effective augmentative and alternative communication devices which can substantially improve the ability of children with ASD to communicate. Still, we find other children with ASD love music and engage with language is song. Music therapy has been shown to be improve many core symptoms of ASD including verbal and non-verbal communication skills (Geretsegger et al., 2014), yet it is underutilized and underfunded. Indeed, aggressive behaviors, which are commonly treated with pharmaceuticals, are many times a consequence of language impairment and an inability to communicate (Posar and Visconti, 2021). Additionally, improvements in ASD symptoms have been linked to improvement in IQ (Sigman and McGovern, 2005; Turner et al., 2006). Thus, improving communication and other symptoms in ASD can have a profound impact on the lives of children with ASD and their families as well as uncover intelligence that is otherwise unappreciated.

Clearly, children with ASD require additional resources. While the lack of resources in low socioeconomic areas may contribute to a lack of early identification of children with higher functioning children with ASD, it may also explain the higher levels of intellectual disability as less resource for intervention will leave children in a more vulnerable state and missed habilitating children for them to a attain their optimal outcome. This is truly a lost opportunity Unfortunately, much of the federally funded research into ASD targets very basic biological mechanisms instead to targeting potentially high-impact, practical treatments.  Thus, this disparity data may be point to that fact that we need to find innovative ways for all children with ASD to attain their full potential and allocate the necessary resources to diagnosis and intervene early and continuously into adolescence and adulthood. 


Al-Mamari W, Idris AB, Gabr A, Jalees S, Al-Jabri M, Abdulrahim R, Al-Mujaini A, Islam MM, Al-Alawi M, Al-Adawi S. Intellectual Profile of Children with Autism Spectrum Disorder: Identification of verbal and nonverbal subscales predicting intelligence quotient. Sultan Qaboos Univ Med J. 2021 Aug;21(3):386-393. doi: 10.18295/squmj.4.2021.001. Epub 2021 Aug 29. PMID: 34522403; PMCID: PMC8407906.

Dawson M, Soulières I, Gernsbacher MA, Mottron L. The level and nature of autistic intelligence. Psychol Sci. 2007;18:657–62. doi: 10.1111/j.1467-9280.2007.01954.x

Geretsegger M, Elefant C, Mössler KA, Gold C. Music therapy for people with autism spectrum disorder. Cochrane Database Syst Rev. 2014 Jun 17;2014(6):CD004381. doi: 10.1002/14651858.CD004381.pub3. Update in: Cochrane Database Syst Rev. 2022 May 9;5:CD004381. PMID: 24936966; PMCID: PMC6956617.

Giofrè D, Provazza S, Angione D, Cini A, Menazza C, Oppi F, Cornoldi C. The intellectual profile of children with autism spectrum disorders may be underestimated: A comparison between two different batteries in an Italian sample. Res Dev Disabil. 2019 Jul;90:72-79. doi: 10.1016/j.ridd.2019.04.009. Epub 2019 May 10. PMID: 31082681.

Grondhuis SN, Mulick JA. Comparison of the Leiter international performance scale – Revised and the Stanford-Binet Intelligence Scales, 5th Edition, in children with autism spectrum disorders. Am J Intellect Dev Disabil. 2013;118:44–54. doi: 10.1352/1944-7558-118.1.44

Pines AR, Sussman B, Wyckoff SN, McCarty PJ, Bunch R, Frye RE, Boerwinkle VL. Locked-in Intact Functional Networks in Children with Autism Spectrum Disorder: A Case-Control Study. J Pers Med. 2021 Aug 28;11(9):854. doi: 10.3390/jpm11090854. PMID: 34575631; PMCID: PMC8465896.

Posar A, Visconti P. Update about “minimally verbal” children with autism spectrum disorder. Rev Paul Pediatr. 2021 Sep 1;40:e2020158. doi: 10.1590/1984-0462/2022/40/2020158. PMID: 34495269; PMCID: PMC8432069.

Shenouda J, Barrett E, Davidow AL, et al. Prevalence and Disparities in the Detection of Autism Without Intellectual Disability. Pediatrics. 2023;151(2):e2022056594

Sigman M, McGovern CW. Improvement in cognitive and language skills from preschool to adolescence in autism. J Autism Dev Disord. 2005;35:15–23. doi: 10.1007/s10803-004-1027-5.

Turner LM, Stone WL, Pozdol SL, Coonrod EE. Follow-up of children with autism spectrum disorders from age 2 to age 9. Autism. 2006;10:243–65. doi: 10.1177/1362361306063296.


Angus Files

Thanks Ann always great to see recovered autistic how great or small the gains are.The golden rule is if you've seen one person with autism you e seen one case they are all different. Story's like yours always help so keep posting wherever you can.

Pharma For Prison



A person can have a pretty high IQ; that they can measure.
And still be mentally disabled.

Ann Carney

My parents were told my brother was mentally retarded as he couldn't talk at age 4. But my Mom noticed he could make change yet wondered if she was in denial. But she brought him to speech language therapy and the woman running it believed it was a motor issue. She had my mom push him in a car where he had to use his hands and legs (this was in the 1960's). On a road trip he sat in the back seat hummed and played opening and closing his hands for 2 weeks straight. My parents were despondent. Starting to accept the inevitable. Suddenly he looked at the sunset and said "look at the multicolored sky". Mom said they almost crashed the car in the shock and joy that he could talk, and not only talk but talk in poetry (I changed the words a bit as it is a family story). He ended up a star sportsman and in the top 10% of his class. At age 60, he recently married for the first time to a quirky wonderful woman similar to him. He is a great guy. And I wonder if his speech therapist's understanding of motor planning skills is why he did well? Something they knew and forgot? Or is it why OT helps these children so much. Published this to give hope. Also my Mom said when she saw my son "stimming" to let him and turn it into something acceptable. She felt that stimming must be their attempt to correct the problem . So when my son did hand movements we got him OOBI eyes. Hope this story helps someone.

Angus Files

Its very difficult if not impossible to get the brain cells to work again in Autistics. If you take someone who has had a stroke the chances are the part of the brain that has been damaged was working good before the stroke. When you have a baby injected, assaulted with killer concoctions of brain damage poison that destroy the developed brain cells that had developed a bit up to 2 yearss old if your stretching it, but never developed full as in adults. Were trying to get working cells that were never there or never fully functioning. Just as hard as it possibly can be in my opinion.but never giving up I owe him.

Pharma For Prison


Vicki Hill

My son with ASD is verbal. At age 7 his IQ was near genius level. By high school, his IQ was average. In his mid-20s, his IQ met the low-IQ level required to qualify for state services.

Why the big change? A psychologist explained to me that IQ tests are measured against what others of that age group would typically know and be able to do. Autism clearly is a developmental delay; his variation from the norm became more and more obvious as his peers developed into young adulthood, while he was still struggling with many things that children and young teens are learning. This discrepancy caused the fall in the IQ level.

If you want to discuss politics, science or history with him, you would think that those early IQ scores were accurate. But he is age 35; can't handle money and needs reminders to shower and put on clean clothes. IQ isn't simply book learning; it includes ability to function in society.

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