Augmentative communication

 “Things that have happened over the last few days have made me think seriously, especially those with serious medical issues. Everything is brushed under sensory and behaviour. Some simply deny the treatment because they don't want to take the risk.”

It is this post by a parent that prompted me to take a closer look at the comorbid medical conditions associated with ASD. There is a lot of despair and helplessness when it comes to handling these conditions, for many reasons.

As part of this series, we attempt to understand these co-morbid conditions, biomedical interventions and the difficulties parents face in accessing health care. These posts are not intended to be medical advice or treatment recommendations.

Starting this series with an interview with Dr.Shilpa Rao. Dr. Rao is a practicing pediatrician with over 25 years of experience. The combination of experience as a therapist and as a clinical diagnosis specialist makes her an excellent autism specialist. She has also conducted many training workshops both for parents and professionals alike. Her son Shubham is an adult on the spectrum.

What are the common conditions that often coexist alongside autism spectrum disorder (ASD)? Co-morbidities as they are addressed.

Common Comorbidities Associated with Autism can be classified as Medical & Psychiatric Comorbidities.

To begin with, ASD can coexist with the listed Neuro Psychiatric Disorders like ADD, ADHD, OCD, Tourette’s Syndrome, Anxiety, Sensory Processing Disorders, Learning Disabilities & Depression & Intellectual Disabilities.

Medical Conditions like Mitochondrial Dysfunctions, Obesity, Fragile Syndrome, Down Syndrome, Muscular Dystrophy, Epilepsy, Sleep Disorders, Gastrointestinal Disorders, Inflammatory Bowel Disease, Food inTolerances and failure to thrive, ENT Infections, Dental Infections, Metabolic Disorders & Auto-Immune Disorders.

It is important to rule out & identify Associated Co Morbidities as they influence the Development and severity of symptoms and by itself cause behavioral issues, therefore; it is important to consider the child with autism as a whole and not overlook possible co-morbid conditions.

The Physician should rule out presence of medical conditions before moving on to other interventions and therapies. Co Morbidity is the presence of one or more additional disease or disorder that coincide with a primary disorder and most of them are treatable.

What is biomedical intervention?

Biomedical Interventions are understanding biological and Medical Aspects of autism.

There are many biomedical interventions out there. GFCF, chelation, Immunoglobulin therapy. A number of factors make biomedical interventions unsuitable - lack of scientific evidence, potential harm, lack of individualization, parents playing doctors,lack of standardised test results, financial implications, different approaches to treating the same condition, etc. It is overwhelming for a parent. How are these concerns addressed.

It involves assessing, understanding and treating a full range of Associated Medical Issues  like Metabolic Dysfunctions, Nutritional Deficiencies, Genetic Auto Immune Dysfunctions, GI Issues and sleep disorders Behavioral and Psychiatric Disorders, environmental diet and others (BIOME &MITOCHONDRIAL DYSFUNCTIONS)

The goal is to optimize not functional but optimal health, through diet and nutritional supplementation and in some cases hormones to treat identifiable medical issues.

Immune Therapy has been making its rounds and clinical trails are on, especially if an Auto Immune Trigger is identifiable. This Therapy helps by boosting the immunity and reducing the inflammatory responses in an individual with ASD. It restores balanced to the immune system there by reducing Autism Sign & Symptoms.

Chelation Therapy: Several Medical Research have shown that heavy metal toxicity in individual with ASD like lead, mercury, Arsenic.It is a medical procedure that uses certain Ante dote to eliminate heavy metals and should be done under strict medical supervision.There are very few clinical trials on ASD and Chelation Therapy and its safety in children with ASD needs in depth studies yet.

Personally, I would not recommend the same as in India there are not much studies to prove its safety and efficacy.There is no specific cause yet identified for ASD and genetic research is yet to pinpoint specific causative gene.

Cure is the eradication of a known cause. So, cure is impossible by any mode of treatment, just not bio medical interventions.

Scientific Evidence on Bio Medical Research are available to read especially on Neurotransmitter dysfunctions, Gut Dysbiosis, Auto Immune Triggers and 5 MTHF / MB 12 insufficiencies and so on.

I don’t see a potential harm all though using nutritional supplements to enhance gut brain functions.

There are many common Biomedical Issues that can exist with ASD like already mentioned Mito Dysfunction, Oxalate Sensitivity, Dopamine Inhibition so individualization is not always present in all patients. Individualization is possible if a Biomedical Intervention follows a prior detailed clinical history, evaluation and screening test and treatment plans and individualization happens in choosing the supplements and their dosages. Standardized Tests are now available to some extent in USA, UK not yet in India due to lack of professionals willing to contribute and learn about ASD.

Financial Implications are a possibility due to tests being shipped aboard. Not many efficient labs in India to test at a higher molecular level.

Therapies of different kind are overwhelming too e.g.: Speech Therapy VS ABA or OT VS SI.

Any medical issues in ASD are complex by itself and need time and perseverance. Biomedical Interventions are a marathon and not a sprint. No quick fix is available, having said that many individuals with ASD have benefitted with Bio Medical Interventions.

The medical community has not reached a consensus on the existence and validity of PANDAS (Paediatric autoimmune neuropsychiatric disorder) as a clinical entity. It is a condition that proposes a link between streptococcal infections and sudden onset of neuropsychiatric symptoms. To my knowledge, you happen to be the only practitioner dealing with this in India. Parents are consulting with doctors in both the US and the UK. Your views on this.

Medical Community and Autism in India are Diverse issues. Pans & PANDAS is a newer clinical advent and not many doctors are aware of it yet.

I am fortunately aware, read and treated and treating many individuals with ASD and pans & pandas.

Forget about Pans many doctors cannot diagnose Autism yet Pandas is a term that they may not have heard yet.

Indian Medical Journals or textbooks are not upgraded yet sadly they have yet small passage about Autism in there, in India doctors choose their patients and that has to change.

Awareness about ASD and associated medical conditions is a must and I am willing to train provided they are willing to learn.

Pandas is a red alert condition Associated with ASD. Pans & Pandas are severe forms of OCD that appear suddenly in young children accompanied by other confusing and distressing symptoms, usually trigger by an streptococcal infections that triggers extreme Auto Immune issues, other infections that can trigger pans include LYME Disease, Flu, pneumonia, mononucleosis & a few cases of occult gut or viral infections.

Common Symptoms include OCD & Severely restricted food intake and at least two cognitive behavioural or neurological symptoms, anxiety, separation anxiety, emotional lability, depression, aggression, irritability, oppositional behavior, tics, developmental regression, deterioration of learning, sensory & motor abnormalities, sleep disturbances, bedwetting, urinary frequency, pacing, wandering, hyperactivity & hallucinations.

Treatment includes antibiotics, antihistaminic which temporarily reduce symptoms, but remissions are very common.

Can pans go away? A flare up does not last forever and symptoms do eventually subside and research says by adolescence as immune systems mature symptoms fade away yet can revert back.

Parents commonly express frustration that their concerns about medical conditions are being dismissed as solely autism-related behaviours and sensory issues, resulting in the use of antipsychotic medications as a treatment approach.

Role of Anti-Psychotic Drugs usage is yet again inadequate knowledge about ASD and its Co Morbidities take many parents to psychiatrics who have no clue on gut issues, Auto Immune Dysfunctions are contributing factors to anxiety in ASD and they cannot. It's like an ASD child has hyperactivity and aggression. It's due to many associated factors, just not bad behaviors as they think.

Serotinine the happy hormone is generated in the gut so you can never be happy and calm until you heal the gut. The gut brain axis has to be considered when treating anxiety, aggression, & sleep disorders. Have you not seen so many individuals with ASD and antipsychotic Drugs but yet are the same?

Root cause identification is a must and needs a great level of expertise to test and treat.Until you heal the gut, nothing works.

ASD is thus a whole-body disorder originating in the gut and then to the brain.

A concerning aspect is that children are being perceived as "cases" in the context of autism treatment, with limited involvement in the decision-making process, while parents strive to "cure" their autism. What are your views on this?

ASD with medical Co Morbidities are considered as patient or cases for the fact if associated medical issues are identifiable. I am very clear when I evaluate my patient right from the birth to the present and involve parents to understand the progress of TEST TREAT TEACH autism.

Cure for autism is only possible when we find the cause.

Thank you Dr. Shilpa Rao for taking time out of your hectic chedule to do this interview.