​Childhood Disintegrative Disorder

Childhood Disintegrative Disorder is a childhood problem in which children grow normally till the age of 2. After 2 years of age children become socially aloof and develop severe resistance to communication. They lose their capability to communicate along with other few skills.

In the broader spectrum, Childhood Disintegrative Disorder falls under Autism Spectrum Disorder. However both have a lot of differences. Unlike autism, in childhood disintegrative disorder, the child, after years of normal development shows a drastic decrease in social capabilities. The child also begins to digress in other skills like communication, listening, receptivity and response. This digression is usually very dramatic and does not happen gradually, like in autism.​​

Children with Childhood Disintegrative Disorder usually show a dramatic decrease in at least two or more functions below (which had been previously well-acquired). 

  • Bowel control: your child will lose the sense of bowel control and will start defecating anywhere at any time. This will happen when you’ve already potty trained your child and even after performing it independently, your child will lose the capability to realize the need  and time to defecate

  • Bladder control: your child will lose control over his or her bladder and will pass urine at odd moments. Your child will have been toilet trained previously but may seem to have forgotten the procedure or will not realize when he or she is passing urine. 

  • Social skills: Your child, who used to be an extremely energetic and talkative child, will start facing a lot of difficulty in interacting with people or even with kids of his or her age. Your child will become very less responsive and seem zoned out most of the time. Your child may not be respond to your questions correctly, like he or she used to before. 

  • Motor skills: your child’s motor skills will regress and you may see a drastic shift in him or her skills like picking up objects, the ability to walk or climb, etc.

  • Play: your child will not find playing interesting any more. He or she may not play indoors and will not interact with kids playing in the playground. ​​​

​Your child will usually grow in his or her own pace. But if you feel that the previously acquired skills and habits are digressing and being lost, it is best to consult your doctor once to be sure that whether your child is experiencing Childhood Disintegrative Disorder and the situation is not due to any underlying cause. You can consult the doctors at the Children's Hospital Service Line at The Aga Khan University Hospital for an accurate diagnosis and timely treatment. ​​

Your time with your doctor maybe limited, so make sure to prepare for your visit beforehand. Here are some tips to help get you started​​

Your child will be diagnosed by the team of internationally trained medical specialists working with the Children’s Hospital Service Line, through a process of identifying his/her symptoms. The child specialists will deduce the child as suffering from the disorder or not through the following criteria. He/she will be diagnosed with the disorder if: 

  • Your child’s development has been normal for two years after birth. This includes motor and social skills, along with cognitive skills.

  • Your child loses at least two of the following skills after he or she has developed fine for two years:

    • Motor skills, which include the skill to coordinate and move around objects.

    • Bowel and bladder control

    • Play skills

    • Ability to understand verbal and nonverbal communication

    • Ability to talk

    • Ability to respond

  • Your child loses normal functions, as described below:

    • Social communication and interaction: This includes lack of social interaction. Your kid does not make friends with kids around. Your child may not respond correctly when asked a question and will fail to understand feelings and cues of others around. 

    • Responsiveness and receptivity: Your child has stopped responding to questions like he or she used to. Your child does not know how to carry forward a conversation and uses the same words again and again. This includes repeating the same line again and again as well.

    • Repetitive behaviour: Your child has developed compulsive behaviours. He or she keeps on tapping their hand continuously. They may become attached to specific rituals or routines. Your child may develop a fixed posture, also known at catatonia. 

Your child specialist will also perform development screening at every visit that you make to him.​​

There are no medications for Childhood Disintegrative Disorder and it is usually cured through counselling. However, severe situations like repetitive behaviour which may harm your child can be subsided through anxiety and depression medications.

In the attempts to counter the disorder, the multidisciplinary medical care at the Children's Hospital Service Line will include Behaviour Therapy. This type of therapy will be used by your child's psychiatrist, therapist, caregivers, parents and even school teachers. This works towards relearning the lost skills and minimizing the loss of speech or hearing. Your therapist has to be very consistent with this. Usually response from the child is triggered by luring him or her through a reward at the end.​​

The Aga Khan University Hospital offers various support services to help with managing or recovering from the disease or condition. These include but are not limited to nutrition, physiotherapy, rehabilitation, specialized clinics and some patient support groups. Your doctor or nurse will advise you accordingly.

The Aga Khan University Hospital offers financial assistance to those who are in need and fulfil the eligibility criteria. For further information, you can contact the Patient Welfare Department. You can find the contact number of the Patient Welfare Department in the 'Important Numbers' section on the website homepage.

The financial counselling staff is available during office hours, at the main PBSD (Patient Business Services Department), to answer your financial queries on treatments' costs and authorize admissions on partial deposit as per hospital policies allow. The financial counsellor in the emergency room is open 24/7. You can find the contact number of the Patient Business Services in the 'Important Numbers' section on the website homepage.​​

Your doctor and or nurse will give you specific instructions about the prescribed medication. Please ensure that you take or use the prescribed medicine as advised. It can be dangerous to your health if you self-prescribe. Please inform the doctor or nurse beforehand if you have experienced any adverse reactions to any medications in the past. If you experience any symptoms of drug poisoning, overdose or severe reaction please contact the Pharmacy Service at The Aga Khan University Hospital immediately. You can find the contact number of the Pharmacy Services in the 'Important Numbers' section on the website homepage.​​

The information provided on our website is for educational purposes and not intended to be a substitute for medical advice, diagnosis or treatment. You should always seek the advice of your doctor or other healthcare professional provider.