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What is Intellectual Disability?

Intellectual disability is a neuro-developmental disorder characterized by impairment in the child's cognitive and intellectual functioning. The child usually has difficulty in learning and grasping as compared to children of his/her age. They also have difficulty in adaptive and social functioning in everyday life. The main difficulty with them lies in completing formal education. Due to their limited intelligence, they cannot attend a regular school. Due to this reason, they are put in a special school and taught basic concepts and activities of daily living. An IQ score below 70 indicates towards a diagnosis of Intellectual disability. Children with Down Syndrome or Fragile X syndrome also have Intellectual disability. A diagnosis of Global Developmental delay is given for children under the age of 5 years when the level of severity cannot be assessed in early childhood.

There are 4 levels of Intellectual disability based on the IQ score as well as their level of adaptive functioning: mild, moderate, severe and profound.

Level of Intellectual disability IQ range Degree of functioning
Mild Intellectual disability 50 - 55 to 70
  • Can fully take care of his basic needs – eating, brushing, bathing, dressing and toileting.
  • Has difficulty in reading, writing and comprehending.
  • Are very good candidates to be trained.
  • Can be taught some easy, repetitive work which can give employment – jobs such as Xeroxing,working as a Helper, House-keeping, Cooking, Back office, Machine operator, Loading-unloading, Arranging groceries etc.
  • Can also travel by themselves in the city if taught to.
  • Cannot take up responsibilities of marriage or parenting.
  • Still need supervision of the elders.
  • Can communicate better and express their basic needs.
  • May or may not understand simple, basic calculations.
  • Can use a calculator if taught and can identify numbers.
  • Can be encouraged to make use of their strength/interest – such as cooking, drawing, dancing, sports etc
Moderate Intellectual disability 35 – 40 to 50 - 55
  • Is slower in understanding and grasping.
  • Always needs parental assistance for basic activities – eating, dressing, bathing and toileting.
  • Cannot live an independent life.
  • Has difficulty in communicating.
  • Cannot take up a job.
Severe Intellectual disability 20 -25 to 35-40
  • Severe impairment of intellectual functions.
  • Cannot understand their own basic needs.
  • May or may not recognize family members as their own.
  • Needs assistance to carry out all basic activities – eating, bathing, brushing and toileting.
  • Significant behavioral issues – such as physical abuse.
  • Significant difficulty in speech – can hardly communicate. Will only make sound to indicate for food or water.
Profound Intellectual disability Below 20 or 25
  • Completely dependent on family for all the activities of daily living

In about one-third of the cases of Intellectual disability, the cause is unknown. However, there are certain known risk factors or reasons that can lead to Intellectual disability in the child.

  • Infection – Any infection at the time of birth or during pregnancy. For ex: no proper development of the fetus, not having enough oxygen reaching the brain, alcohol consumption during pregnancy etc.
  • Genetic conditions – Genetic conditions such as Down's Syndrome, William Syndrome, Fragile X syndrome etc.
  • Metabolic - (such as hyperbilirubinemia, very high bilirubin levels in babies)
  • Nutritional – Malnutrition being one of the major causes leading to intellectual disability.
  • Environmental factors – such as lead or mercury poisoning.
  • Iodine deficiency.

The symptoms exhibited by children or patients with Intellectual disability differ according to the level of their disability – mild, moderate or severe.

A child with Mild Intellectual disability will have:

  • Poor attention and concentration span.
  • Difficulty in following multiple commands at one time.
  • Mild impairment in memory, learning and grasping.
  • Low sitting tolerance, hyperactivity in some cases.
  • Extremely withdrawn behavior or being inactive throughout the day.
  • Has difficulty making friends and communicating clearly with other children or people.
  • Mild impairment in awareness about surroundings and poor judgment.

A child with Moderate Intellectual disability will have:

  • Poor command following – difficulty following one step basic command.
  • Poor memory, learning and grasping.
  • Presence of hyperactivity, poor sitting tolerance and aggressive behavior at times.
  • Fully dependent for basic activities of daily living – eating, bathing, dressing and toileting.
  • Presence of irrelevant laughing or crying at times.
  • Difficulty in communication and expressing their basic needs.
  • Presence of behavioral issues at times –such as stubbornness and physically abusive behavior.

In order to plan a treatment for a child or adult with Intellectual disability, the first and foremost thing is to derive his/her IQ.

The IQ test mainly used is:

  • the Wechsler Intelligence Scale (WISC) for Children and
  • the Wechsler Adult Intelligence Scale (WAIS).
  • If there is a language barrier, then the Wechsler Adult Performance Intelligence Scale (WAPIS) is used for such a population.
  • We also use the Malin's Intelligence Scale for Indian Children which is an Indian adaptation of the WISC. It is used for children in the age range of 6 to 15 years only. Another IQ test used
  • The Kamath Binet test is also used to assess the IQ of a child from the age of 3 years.
  • If the child is unable to perform in the objective IQ test, then a Social Quotient (SQ) is derived based on the questions asked to parents. It is the Vineland Social Maturity Scale (VSMS).

Based on the performance of the child on the above mentioned tests, the detailed clinical history and his/her interests, the child's strengths and weaknesses can be analyzed. This will help to plan his treatment ahead. His strengths can be utilized to develop his potential to the best of his ability and weaknesses can be worked upon. A supervised rehabilitation plan plays a big role in making such children independent and lead fulfilling lives. Some of the treatment options available are as follows:

  • Psycho-education - The first and foremost thing is to educate the parents about their child's strengths and weaknesses. This will help the parents to know in what area to work with and encourage the child to pursue it further.
  • Behavior therapy - Behavior modification strategies can be taught to the parents to reduce the child's undesirable behaviors and replace it with desirable behavior through positive and negative reinforcement.
  • Pharmacotherapy – Consulting a Psychiatrist to deal with the behavior issues of the child that are not manageable by psychotherapy alone. He/she can be started on medications to reduce his hyperactivity and aggressive behavior. Only when these behaviors go down, the child can sit in one place for longer and pay attention on any task.
  • Special School – It is extremely important to send these children to school, especially children with Mild to moderate level of intellectual disability. Schooling helps them to learn to read and write and also socialize which helps them to make new friends. They meet children with similar kind of problems and can support each other and not feel different. The teachers can help them to encourage their strengths and potential which can enable them to lead independent lives.

Stem Cell therapy – This is a new form of treatment available for Neurodevelopmental disorders. Stem cell therapy helps in reducing the problem behaviors of the child in the first place. For ex: reducing hyperactivity, increasing his sitting tolerance, reducing aggressive and stubborn behavior which allows the child to cooperate. This in turn builds up his learning capacity and grasping power. His social interaction improves as well. He understands relationships better and develops a sense of self.

We have treated almost 300 patients of Intellectual disability (child cases as well as adults). After doing SCT, we have seen tremendous improvement in most of our cases of Intellectual disability. In case of Mild Intellectual disability, the child shows improved attention span and concentration, increased speed of processing, reduced hyperactivity and better sitting tolerance in school. He also shows interest in studies, can learn faster and remember better than before. His performance in school improves and making him study becomes more easy for the parent or the teacher. He becomes more active and responsible. If taught properly by a special teacher, the child can also learn basic mathematical calculations and the use of a calculator in daily life. He becomes more confident of his abilities and starts venturing out as well. His communication skills improve and he can make friends and socialize. In case of Moderate/Severe Intellectual disability, wherein the child or adult is dependent for his basic ADLs on the family, his level of independence also increases. He is able to take bath on his own, gets toilet trained or at least indicates to go to the washroom. This makes taking care of the child more easy and comfortable by the family.

What is Intellectual disability/ Mental Retardation exactly?

Intellectual disability is basically an impairment in general mental ability that impacts every day functioning in 3 major domains:

  • The conceptual domain – which includes skills in language, reading, writing, math, reasoning, knowledge, and memory.
  • The social domain - which refers to interpersonal communication skills, empathy, social judgment, the ability to make and retain friendships, and similar capacities.
  • The practical domain - which centers on self-management in areas such as personal care, job responsibilities, money management, recreation, and organizing school and work tasks."

How can the diagnosis be made?
A diagnosis is made based on the clinical evaluation and a standardized intellectual testing. An IQ score of 70 or below is still considered to make a diagnosis of Intellectual Disability. The diagnosis can also be made based on the child's clinical picture and adaptive functioning if the IQ test cannot be done.

When is the diagnosis made?
The diagnosis is made after infancy, when the child just begins school.

How early can parents seek early intervention when their baby is found to be developmentally delayed?
As soon as it is recognized that the young child is developmentally delayed in cognition and intellectual functioning in comparison to other normal children or siblings, prompt treatment and intervention will help the child to reach his/her optimal level of development.

What is the life span of a child with Mental retardation?
Intellectual disability by itself does not reduce a child's normal life span. A lot depends on the cause, severity of disability, associated medical problems and the level of care given.

Will I have another child like this?
Depending on the cause, there may be the possibility of another child being affected. Therefore, parents are advised to go for genetic counseling prior to planning for another child.

Are there possibilities of other disabilities along with Intellectual disability/Mental Retardation?
Yes. The most common co morbid disabilities include autism, cerebral palsy, hyperactivity and epilepsy.

What is available in terms of treating or dealing with Mental Retardation/ Intellectual disability?
A child with Mental retardation or Intellectual Disability needs specialized training and one to one attention as well as specific therapists.

  • Special educators – who make programs specifically designed to address each individual child's special needs by modifying teaching methods and the child's environment.
  • Occupational therapists – who focus on teaching skills to make the child capable of carrying out his/her basic activities of daily living. The main goal here is to make the child independent and take care of him without any assistance.
  • Speech Therapist - It has been found that many children with Intellectual disability also have trouble articulating speech due to which it affects their communication skills and forming friendships. Speech therapists help and focus on language components which include manipulating sounds, using minimal units of meaning, sentence construction as well as social aspects of communication.
  • Psychologists – Psychologists play a crucial role in terms of assessment and classification of intellectual disability. Assessment includes carrying out a formal standardized intellectual testing (IQ test) on the child and counseling the parents accordingly. It is important for the parents to know the capacity or potential of their child and encouraging him/her accordingly taking into consideration his strengths and weaknesses.

Are there different types or levels of Mental retardation?
Yes. There are different levels of Mental retardation which fall into mild, moderate, severe and profound.

  • Mild Mental retardation - Children with mild retardation can generally learn reading, writing, and math skills between the third- and sixth-grade levels. In adulthood, they may have jobs and live independently.
  • Moderate mental retardation - Children with moderate mental retardation may be able to learn some basic reading and writing but require supervision and monitoring in day to day living. They need assistance to carry out their basic activities of daily living.
  • Severe mental retardation - Children with severe retardation are almost fully dependent for their activities of daily living.
  • Profound mental retardation - Children with profound retardation will need intensive support for the rest of their lives. They are completely dependent on the family for their activities of daily living.

Is it important to send the child to school?
Yes, of course. It is extremely important that the child be sent to school, either normal or special school depending on the severity of his intellectual disability. It is important that he be given exposure to a learning environment, peers of his age and capabilities from a young age itself. Special schools provide individualized education, addressing specific needs. Student to teacher ratios are kept low, depending upon the needs of the children. Special schools provide modifications to make learning simpler.

How does stem cell therapy work?
The biological task of stem cells is to repair and regenerate damaged cells. Stem cell therapy exploits this function by administering these cells in high concentrations directly in and around the damaged tissue, where they advance its self-healing and repair.

In children with mental retardation, generally, certain areas of the brain like the frontal cortex and temporal lobe are damaged or functioning less, which can be seen on the PET CT Scan brain. Stem cells home on to these sites of damage and help improve functioning of these areas.

Are there ethical concerns surrounding adult stem cell research and therapy?
Bone marrow transplantation has been used successfully for genetic disorders of blood, such as sickle cell anemia, thalassemia, as well as cancers such as leukemia. Since our therapy uses these very cell, which are harvested from the patient's own body (autologous cells), there are no major ethical concerns. Ethical concerns are primarily on the use of embryonic stem cells (which we do not use).

Does the treatment have any side effects?
Stem cell therapy is minimally invasive and reasonably safe. None of our patients have shown any neurological deterioration so far about the stem cell therapy itself. Some side effects, such as headache (spinal headache) lasting 3-4 days which is generally self-limiting, neck/back pain, vomiting, some mild rash or pain at the site of bone marrow aspiration/stem cell injection may occur. However, like any other medical or surgical treatment unexpected complications are always a possibility. These complications may be related to the medicines given, the stem cell procedure, the anesthesia, and the rehabilitation or to any of the preexisting medical or neurological conditions.

In case of children with seizures, or previous history of seizures or an abnormal EEG, a small possibility of triggering seizures can be there. However, proper antiepileptic cover/drugs, could circumvent this problem.

How long will it take me to know that I have benefitted from the treatment?
Maximal improvements are seen around 3-6 months after the treatment. However, in many patients there are slow progressive improvements that continue for several months/years later. Most patients do show some immediate improvements also i.e. before the discharge, in some of their symptoms.

Is the transplantation of the stem cells done once or more than once?
The decision to do the therapy a second time is taken after seeing the progress/improvements after the first therapy. If the patients show some encouraging improvement, then the case is reviewed by the entire medical and rehabilitation team. Certain special imaging tests, such as PET CT Scan of the brain, would be repeated and then a second treatment may be recommended. This may be done anytime between 3-6 months of the first therapy.

Can other treatments be taken at the same time?
We will review what other medications the patient is already on. In most cases, we do not discontinue any already going on treatment. However, this is decided on a case by case basis. Please inform us about any medications you are taking beforehand.

Will my child improve after stem cell therapy?
In NeuroGen Brain and Spine Institute, we have treated over 25 patients with mental retardation. They were administered with autologous stem cells, intrathecally. On follow up, majority of the patients improved in various domains of symptoms such as cognition – attention, concentration, learning, speed of processing and grasping, social interaction, communication, toilette training, hyperactivity, sitting tolerance, self-care, etc.This consequently, relieves the pressure of the caretaker and the family. Overall mental development is improved which is recorded as improvement in IQ as well.

Case Report 1

An 18 year old case of Intellectual disability underwent Stem Cell therapy at NeuroGen twice. At the time of first Stem cell therapy, she had the following chief complaints as reported by the parents:

  • She could not pay attention in studies at school.
  • Her social interaction was affected. She would not come out of her room if there were guests at home. She could not make friends easily at school or build a good rapport with the teacher.
  • There was presence of irrelevant aggressive behavior post which she would even hit the mother and father.
  • Her speech was not clear which was also one of the reason which affected her social interaction with other people apart from her family.
  • Poor memory in terms of studies.
  • Poor learning capacity. For ex: not being able to read numbers, unable to identify basic colors, shapes or alphabets.
  • Difficulty in taking care of herself. For ex: dressing, combing her hair, sleeping alone etc.
  • Difficulty in reading and writing in spite of teaching her several times in school.
  • Her IQ when tested at the 1st SCT was 60 indicating Mild Intellectual disability.

However, after doing stem cell therapy and following a regular rehabilitation program at home, there has been a drastic change and improvement in her condition. The parents report the following improvements after SCT when they came in for a second time:

Learning and Academics:

  • Her learning capacity and grasping power improved from before. She can now read numbers from 1 to 50 after 7 months of SCT.
  • She can identify shapes and matches them independently without any help.
  • She can now recognize 4 basic colors – Red, Blue, Green and Yellow.
  • She can now form stories by looking at the pictures shown which has helped her improve her communication.
  • She can now play board games and solves 30 pieces of puzzles independently without seeing the picture within a span of 4 minutes.
  • She can fix letters and can make small words out of it. For ex: Kite, Gate, Moon, Cake etc.
  • Her memory has also improved significantly. She can now write answers in exams without any help.
  • She has learnt Origami at school does paper folding but requires assistance at times.

    Language, Speech and Communication:

  • Her speech is clearer than before.
  • Her vocabulary has improved and she can now communicate better.
  • She reports what has happened in school after coming back home.
  • She is able to answer questions appropriately.
  • She is also able to ask for her basic needs and wants which was not there before.

Social Interaction:

  • She has now made a good rapport with everyone in her school.
  • She has made new friends and plays with them.
  • Now she doesn't sit alone inside her room when guests arrive. Instead she greets them and asks them for water. She can now sit with them in the hall along with everyone else.

    Activities of daily living:

  • She can now dress by herself.
  • She can comb her hair without any help.
  • She keeps her room neat and tidy.
  • She can even fold her own dresses and keep it properly in the wardrobe.

Case Report 2

Bensen Benny is a 13 year old male child and a known case of Intellectual Disability. He was a Full-term, C-section delivery and weighed 3.7 kgs at the time of birth. His birth cry was immediate. No neonatal complications were reported. However, he had febrile convulsions at the age of 4 months. He was diagnosed with ID at the age of 5 years due to delayed milestones and speech. He had been going to a mainstream school but had minimal learning in the school.

He came to the hospital with the following chief complaints:

  • Poor attention and concentration. He could not focus on any task at hand for more than 1 or 2 minutes.
  • He could only follow 1 step basic commands.
  • Age-inappropriate cognition and problem solving.
  • Poor awareness and judgment.
  • Weak game concept.
  • Exaggerated and inappropriate laughing.
  • Low sitting tolerance. He was always restless and would often leave his seat.
  • Unclear and limited speech. Repetitive speech was also present.
  • Social interaction was minimal and usually restricted to his family members.
  • Academically, he lagged severely. Reading and writing was affected.
  • Dependent for ADLs.
  • No regulation of hunger thereby leading to overeating.
  • Affected body coordination.

His SQ at the time of admission was assessed to be 50 suggestive of Moderate Intellectual Disability.

He underwent Stem Cell treatment post which he followed a rigorous regime of rehabilitation at home where he underwent Occupational Therapy and Speech Therapy everyday under a registered practitioner.

Post 8 months, they reported a deluge of improvements in the patient in various aspects like:

  • Attention and concentration became more stable.
  • He could comprehend and follow more complex commands and did not require as much repetition of commands. He engaged in household chores.
  • He started participating in group games and social play.
  • Exaggerated and inappropriate laughing ceased.
  • Sitting tolerance increased manifold. He was now able to sit in one place for 3-4 hours without leaving his seat and didn't get as restless as earlier.
  • Eye contact became more stable.
  • Aggressive behavior became minimal.
  • The clarity of speech improved. He also started blowing and sucking.
  • He made new friends and was much more interactive with people outside the house. Communication improved as well. He was also able to hold long conversations with people giving appropriate and relevant answers. He started attending family functions.
  • He could sing songs fluently without getting stuck.
  • He could convey more complex needs now and expressed his feelings.
  • Memory and grasping improved significantly. The number of trials required to grasp something new went down drastically.
  • Academically, he started reading 4-letter words, could read the newspaper and comprehend what was read. He also started writing. Object identification improved.
  • He became independent for some of his All Day Living activities (ADLs) like eating that he could now do neatly as opposed to untidily earlier. He became partially independent for brushing, bathing and dressing self. He also became completely independent for toilet.
  • He could recognize and regulate his hunger needs thereby stopping the excessive eating.
  • Body coordination became better and he learnt cycling.
  • His Social Quotient (SQ) increased from 50 to 55.