Interview with Entrepreneur and Philanthropist Sanjay Shah

In this adapted excerpt from an exclusive interview, Sanjay Shah talks about his life as a philanthropist and shares some tips to help others start and grow their organisations.

What inspired you to create Autism Rocks?

Sanjay Shah: My youngest son was two years old when he was diagnosed with autism. My family experienced firsthand the difficulty in finding information about the disorder and possible treatments as well as how underfunded support networks were at the time. Lower- and middle-income families with children on the autism spectrum are at a significant disadvantage because in Dubai, the insurance system does not reimburse them for treatments. Our experience with the system put me on a mission to raise funds for research as well as awareness.

Music plays a huge part in Autism Rocks. How did you come up with the idea to combine autism awareness and live music?

Sanjay Shah: It was a logical marriage between my love for live music and my desire to raise awareness for autism, but it was at a meeting with Snoop Dogg in 2013 when the idea came to fruition. I was fortunate enough to persuade Prince to perform at an invitation-only show in London in 2014 to raise money for research and Autism Rocks was born. Since then, many musical celebrities have performed at Autism Rocks events, including CHIC, Michael Bublé, Lenny Kravitz, Drake, Mark Ronson, Ricky Martin, Justin Bieber and Nile Rodgers. With the help of some of the most famous names in music, we’ve raised a lot of money for autism research and awareness in a short period of time.

How do you stay focused?

Sanjay Shah: I have an active family life and a busy work life so planning is key. I don’t mix work and family time together. Each has its own place and I give my all to both. A typical school day begins with making sure the children get to school on time. I go the office to catch up on emails and meetings. Afternoons are spent with one-on-one time with the children. Because most of my business interests are in Europe and I live in Dubai, I am able to use the time difference to my advantage. I can spend lots of time with the children during the day and devote time in the evening to managing my business.

What’s your strategy for turning ideas into reality?

Sanjay Shah: I wouldn’t say there’s one strategy, but a host of different strategies. My first task is to figure out if an idea is feasible. Will it work? Does it make sense? What does my research indicate? After I make the decision to move forward, I put a talented and coordinated team together. Team members may be people with whom I’ve worked in the past or highly recommended talent from trusted sources.

The wonderful part about pulling together a skilled and knowledgeable team is that I can leave the details to them. I trust them to make the right decisions and empower them to act. That leaves me the time to concentrate on the big picture.

What advice would you give to budding entrepreneurs?

Sanjay Shah: When I was a young entrepreneur, I invested in businesses that, in reality, didn’t have a chance. I handed control over to people I didn’t know. I lost money. From those losses, I learned to analyse every single so-called opportunity from the inside out. I learned that I had to stay in control. I’ve also learned over the years to hire people who know more than I do. As I said before, I am the big picture guy, but I’m not an attorney or accountant. I hire experts to do what they do best. That leaves me time to focus on what I do best.

Budding entrepreneurs should read ‘The 7 Habits of Highly Effective People’ by Stephen Covey. In fact, I recommend all entrepreneurs not only read the book but refer to it often. Written in 1989, it is, with good reason, considered one of the most influential business management books of all time. Based on the concept that the success of others is a reason to celebrate and when one of us wins we all win, it not only conveys a great business philosophy, but a great life philosophy as well.

Bio: Sanjay Shah the founder of Autism Rocks, a charitable organisation that raises awareness about autism through charitable music events

What Role Can Non-Traditional Treatments Play for Those With Autism?

By Sanjay Shah

Can non-traditional treatments play a role in the treatment of children and adults with autism spectrum disorder? According to a massive 2012 study, the answer is a tentative ‘yes.’

‘When combined with proven treatments such as cognitive behavioural therapy, certain alternative therapies can improve outcomes and boost quality of life for autism-affected individuals.’ – Sanjay Shah

Here’s a look at effective — and not so effective — alternative treatments for ASD.

Music Really Matters

When administered by trained therapists in controlled sessions, music therapy has been shown to reduce the incidence of disruptive behaviours commonly associated with autism, mitigate inattentiveness, calm anxiety, improve communication, and strengthen relationships between autism-affected and non-autism-affected individuals. Plus, it’s really fun.

Probiotics: Calming Regularity

It’s not clear that probiotics directly mitigate classical symptoms of autism. However, regular administration improves digestion and regularity, reducing or removing a key stressor for children and adults on the spectrum. Probiotics have many unrelated health benefits too.

A Better Night’s Sleep With Melatonin?

Melatonin is a natural sleep aid by which many busy adults swear. Increasingly, it’s seen as an effective and safe calming agent for autism-affected individuals of all ages. Like probiotics, melatonin is not regarded as a substitute for medicines indicated for the treatment of classic autism symptoms. It’s merely a helpful complement.

Dietary Treatments: Unproven But Harmless?

Probiotics aren’t the only ingestible aid for children and adults with autism.

Though there’s limited evidence that these special diets dramatically improve behaviour, mood, anxiety, communication, and other indicators of autism, many parents and caregivers swear by their efficacy. Researchers and medical professionals generally regard them as safe, as well:

  • Gluten-free diets, which can improve digestion and energy levels for sensitive children
  • Casein-free diets, which remove a common dairy byproduct and may improve regularity and digestion for certain children
  • Omega-3 fatty acids, which have been shown to reduce hyperactivity in small study groups
  • Multivitamins, which can deliver important nutrients for children unable to eat a full, balanced diet

Not All Non-Traditional Treatments Are Safe or Effective

Just as there’s a tremendous amount of information out there about autism’s likely causes, there’s a monstrous volume of misleading or simply inaccurate information about the effectiveness of various non-traditional treatments for autism.

Studies have yet to establish a convincing correlation between the dietary treatments described above and positive outcomes for individuals with ASD. However, the medical and scientific communities are largely in agreement that they’re not particularly harmful, provided autism-affected individuals can physically tolerate the special diets. Such special diets, such as those rich in vitamins and omega-3 fatty acids, may even have health benefits unrelated to ASD.

Treatments to Think Twice About

That’s not the case for all non-traditional autism treatments, however. Some are invasive, painful, or downright harmful to those receiving them. Whilst it’s important to note that the scientific consensus around such matters is always evolving, non-traditional treatments generally regarded as unsafe, invasive, and/or ineffective:

  • Acupuncture and acupressure (traditional Chinese medicine)
  • Chelation therapy (chemical injections intended to remove heavy metals and other toxins from the bloodstream)
  • Oral, topical, or intravenous antifungal drug injections (‘off-label,’ i.e. against the indication for which the drug is normally prescribed)
  • Intravenous human immunoglobulin injections

It’s not necessarily accurate to say that these treatments or therapies have no medical benefit under any circumstances, only that they are generally regarded as counterproductive (and, in some cases, unsafe) when used as non-traditional autism treatments.

The Best Treatment Love Can Buy

We’ve learned more about autism in the past decade than in the preceding three. We still know far too little about the disorder’s causes and progression, but we know enough to know that there are many effective treatments.

Your child is entitled to treatment that improves his or her quality of life and allows you to enjoy as much quality family time together as possible. His or her treatment plan won’t look the same as his or her classmate’s. That’s okay.

The most important thing you can do for your child — and yourself — is to work with a trusted team of medical providers who incorporate the latest research and best practices into their approaches to autism treatment. With your love and support, and a research-based treatment regimen that balances expected outcomes with quality of life considerations, your child can thrive. Your family deserves nothing less.

Bio: Sanjay Shah the founder of Autism Rocks, a charitable organisation that raises awareness about autism through charitable music events

What Should You Know About Medications to Treat Autism? Questions to Ask Your Provider

By Sanjay Shah

Receiving an autism diagnosis is like having the rug pulled out from under your family. In an instant, it changes everything.

Determining what to do next is a momentous task. Rather than review everything that needs to be done to ensure that your child receives proper treatment, we’ll focus here on one specific consideration that you’ll eventually need to face: medications to treat autism.

For many children and adults with autism spectrum disorder, but certainly not all, medications play an important role in treatment and modulation.

‘It’s important to remember that there’s no ‘cure’ for autism, nor any wonder drug or cocktail that can drastically shift the equation at home or in school.’ – Sanjay Shah

Before beginning a medication regimen, approach your autism specialist or GP with a list of prepared questions about what it’s likely to entail. Though this nine-question set is by no means comprehensive, it’s a good indication of the sorts of queries you should ask during your limited time in the examination room.

What Symptoms Are Autism Medications Equipped to Treat?

Different medications have different indications, of course. If your provider recommends a specific medication or combination of medications, ask them on the spot which autism symptoms they’re intended to treat.

What Medications Might Help With My Child’s Specific Symptom Set?

If your provider does not recommend specific medications, and you’re interested in pursuing medical treatment, ask for a list of options to treat the symptoms your child is experiencing.

Are Any Tests Required Before My Child Begins Treatment?

Some medications require blood tests before treatment begins. Others require blood tests after the regimen commences. Make sure you know which are which. If there’s a suitable alternative that doesn’t require testing and has been shown to mitigate symptoms in similar fashion, it may be a better fit for your child.

What Are the Potential Side Effects?

This is an important question to ask before beginning any course of treatment. Some medications indicated for autism symptoms have well-known, deleterious side effects that may negatively impact quality of life or patient health. Ask about possible drug interactions as well: if your child is taking other medications, regardless of their indication, the risk of harmful interactions is real.

How Long Does It Take for Pharmacological Treatment to Produce Results?

This is a crucial expectation-setter. No autism treatment medication produces results overnight, and some can take weeks or even months to reach full efficacy. Know how long you’ll need to watch your child before reaching a determination regarding the medicine’s effectiveness.

Does My Child’s School or Caregiver Need to Know About the Medication?

If the medicine needs to be taken during the daytime or at regular intervals throughout the day, the answer to this question is likely to be ‘yes.’

How Can I Encourage My Child to Take the Medication?

It’s natural for autism-affected children to resist medicine regimens, particularly when the delivery method is unpleasant. Your GP will no doubt have thoughts on how to break through this resistance.

Can the Regimen Be Stopped in the Event of Undesirable Effects?

It’s not always safe to stop taking a medication without first consulting a physician. Your GP will know whether a given medication’s dose needs to be stepped down.

Do Other Options Exist / What Else Should We Do for Our Child?

Medication by itself is not a complete answer to autism. Cognitive behavioural therapies and other non-pharmacological treatments play an important role for most autism-affected individuals — in many cases, a greater role than the drugs themselves.

Your Journey Is Personal

Your family’s autism treatment journey is entirely personal.

No matter what symptoms your child exhibits or how they affect his or her quality of life, it’s crucial that the treatment decisions you make as a family put his or her best interests at heart. By all means, listen to the advice of trusted friends and colleagues who’ve also been touched by autism. Weigh carefully the evidence-based advice of your child’s medical team. Use the vast resources available from legitimate autism-support organisations to inform your choice.

But, at the end of it all, the choice is your family’s and your family’s alone. Don’t ever let yourself be pressured or cajoled into taking a course of action that’s adverse to your child’s interest. Your family’s well-being is too important for that.

Bio: Sanjay Shah the founder of Autism Rocks, a charitable organisation that raises awareness about autism through charitable music events

Some of the Music World’s Biggest Names Support the Fight Against Autism

By Sanjay Shah

Media and nonprofits frequently accuse celebrities of using worthy causes as thinly veiled excuses to self-promote. While this sort of criticism has a grain of truth attached, it sells short the wonderful work and acts of vast generosity that many truly well-meaning celebrities perform on behalf of those less fortunate than they.

Case in point are the A-list musicians who’ve rallied to support funding for autism research and awareness. Autism, a far-reaching and little-understood disorder that affects millions of children and adults around the world, is a cause celebre for some of the world’s biggest musical acts.

‘Their embrace is proof that pop glamour and serious charity work can go hand-in-hand — in actuality, that they’re made for one another.’ – Sanjay Shah

Here’s a look at seven musicians (or groups of musicians) who’ve rallied to support autism-related causes over the past few years.

Justin Bieber

The temporary Autism Rocks Arena, a 21,000-seater placeholder for a permanent venue set to open in 2018, has played host to some of the biggest names in rock and pop. Few have been bigger — or better received — than Canadian pop superstar Justin Bieber, who performed there in 2017. The occasion was a perfect showcase for the reformed bad boy’s Purpose World Tour, and raised thousands of dollars for autism research to boot.

Toni Braxton

The R&B superstar turned reality TV fixture moonlights as a passionate advocate for autism research. As one of Autism Speaks’s most visible celebrity supporters, she highlighted the cause during a primetime airing of Dancing With the Stars, the American celebrity dance programme.

Crosby, Stills & Nash

Crosby, Stills & Nash have been around for a half century, but they show no signs of slowing down. In their old age, they’ve clearly embraced good works. They’re among the most prominent celebrity supporters of Autism Speaks, most recently headlining the Light Up the Blue concert in Las Vegas. For at least one member, autism is personal: Stephen Stills, a founding member, has a son on the autism spectrum.

Tyga & Flo Rida

Well before Bieber electrified the crowd at the temporary Autism Rocks Arena, Tyga & Flo Rida headlined a ‘family day’ there. The event drew thousands eager to hear the two hip-hop stars in the flesh. Who said hip hop couldn’t be family friendly?

Ed Sheeran

Dreamy singer-songwriter Ed Sheeran just announced a date at the Autism Rocks Arena on November 23, 2017. That would mark his first recorded performance at an autism charity event — though it’s clear from his past charitable endeavours (and his entrancing croon) that the man’s heart is larger than most.

Nicki Minaj

The always edgy, ever-fearless Nicki Minaj inaugurated the temporary Autism Rocks Arena in March 2016. Unlike the following month’s Tyga and Flo Rida event, Minaj’s show wasn’t billed as a ‘family day.’ But that didn’t stop the thousands-strong crowd from having a rollicking good time in support of a worthy cause. In the months since her show-stopping performance, Minaj has been a fervent advocate for autism-affected individuals and the research initiatives that promise to change their lives for the better.

Prince

The legendary pop star might be gone forever, but Prince deserves a posthumous mention for his early embrace of Autism Rocks. In fact, Prince was the first artist to ever headline an Autism Rocks gig — a comparatively intimate affair at Cafe de Paris, the legendary London venue, in 2014. Prince didn’t get the chance to perform for Autism Rocks again, but it’s comforting to believe that he’d have had no compunctions about inaugurating the permanent Autism Rocks Arena in 2018.

Do Your Part to Fight Autism

You don’t have to be a pop star to do your part to fight autism.

Autism Rocks began life as a whimsical idea that grew out of a chance conversation. You can think big whilst starting small. Whether you’re organising a fundraising drive at your school or house of worship, or trying to drum up support amongst your friends and colleagues for a charity concert of your own, the most important thing you can do is wear your passion on your sleeve. Your efforts will surely be infectious: once others see that you’re serious about the cause, they’ll rally to your side.

Bio: Sanjay Shah the founder of Autism Rocks, a charitable organisation that raises awareness about autism through charitable music events

Can Music Make a Difference for Kids on the Autism Spectrum?

By Sanjay Shah

Millions of children and adults worldwide live on the autism spectrum — with autism spectrum disorder, or ASD.

After years of heavily funded research and successful awareness-building campaigns, we know more than ever before about ASD. But we still know far too little about what causes autism and what treatments hold the most promise for those affected.

The hope is that this uncertain state of affairs will change in the years ahead.

‘If recent progress in research on the benefits of music therapy for children with autism is any indication, we could be on the cusp of a revolution in our understanding of autism spectrum disorder.’ – Sanjay Shah

If this is the first you’re hearing about the benefits of music for those on the spectrum, please read Nurse Journal’s excellent roundup on the topic.

Let’s take a closer look at some of the key takeaways from recent research in this area, as well as some questions that we’d like to see answered in the coming months and years.

What Is Music Therapy?

Music therapy is ‘a well established allied health profession that uses music therapeutically to address behavioral [sic], social, psychological, communicative, physical, sensory, motor, and/or cognitive functioning,’ according to the American Music Therapy Association (AMTA). As ‘music therapy is a powerful and non-threatening medium, unique outcomes are possible.’

Music therapy uses music as a sort of binding agent to strengthen relationships between individuals with ASD and those around them. According to AMTA, key relationships include those between the autism-affected individual and:

  • The qualified music therapist assigned to him or her
  • Other autism-affected individuals
  • Parents and other family members
  • The music itself

The therapy leverages ‘a unique variety of music experiences in an intentional and developmentally appropriate manner to effect changes in behavior [sic] and facilitate development of skills,’ always in a positive manner — that is, assigning positive associations to the individual’s experience of the music.

Key Benefits of Music Therapy for Individuals With Autism

What are some of the top benefits of music therapy? Researchers have over the last two decades uncovered some key correlations, per Autism Science Foundation:

  • Improving focus and attention: A 2012 study (via Science Daily) found that music therapy significantly reduces the incidence of inattentive behaviours, with corresponding increases in measures of focus and attention among treated individuals. This is crucial for learning and socialisation in group settings, such as classrooms.
  • Facilitating social interaction and communication: A 2004 study found that music therapy may help strengthen linkages between the motor and auditory areas of the brain, potentially facilitating social interaction and communication among treated individuals. This is especially important for the 30% of autism-affected individuals who qualify as nonverbal.
  • Modulating disruptive behaviour: Music therapy has been shown to modulate and minimise disruptive behaviours at home and in public settings. Following music therapy sessions, more than half the 2012 study group improved on measures of inattentiveness, restlessness, and other disruptive indicators.
  • Mitigating anxiety: Music therapy can significantly reduce the anxiety felt by autism-affected individuals. An observational study conducted in 2006 found that treated individuals exhibited fewer anxiety-related behaviours in the period immediately after a music therapy session. Researchers are now working to replicate these results in larger groups.

Do Other Non-Traditional Autism Therapies Work?

Music isn’t the only non-traditional autism therapy that’s generally considered effective by the medical community. Other therapies that have gained favour in recent years include:

Sensory-based therapies (non-musical)
Animal-assisted therapies (horses, dogs, and others)
Special diets (casein- and gluten-free in particular, though there’s not yet strong scientific evidence to support these interventions)
Melatonin (a natural sleep aid that proves calming for some children with ASD)

It’s important to remember that not all widely accepted autism therapies are particularly helpful. Some are overly invasive, confer uncertain benefits, or have actually been shown to be counterproductive. And it’s best to maintain realistic expectations about any specific course of therapy. Many autism therapies, regardless of effectiveness and likelihood of tolerance, treat only some of the symptoms of the disorder — not the underlying disorder itself.

Finally, a word of caution for all. Before changing your child’s therapy regimen or introducing any new activities into his or her routine, check with his or her medical provider and therapy team to weigh the relative merits.

Bio: Sanjay Shah the founder of Autism Rocks, a charitable organisation that raises awareness about autism through charitable music events