One parent’s personal story of living with autism

Abu Dhabi resident Laura Deitz shares her personal experiences with autism

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When daughter Lily, now 4, was diagnosed, it was the hardest thing for her parents to hear. But Laura and her husband are determined not to let it take over their family and define who they are. Giving constant support to Lily with a well-balanced group of therapeutic activities, Laura is “fiercely proud” of who her daughter is, and encourages other parents of children with autism to stay strong for their family. Here, Laura tells us about Lily’s initial diagnosis, finding balance and applying to schools.

How did you receive Lily’s diagnosis?

We moved here when Lily was 13 months old. At the time she was slightly delayed in her gross motor skills but otherwise she had been on target with her zero-12 month milestones.

We started noticing a delay initially past that but the feedback we’d been given from paediatricians here is that every child develops at their own pace, and it’s important to give them the flexibility and space to achieve those milestones when they’re ready.

At 18 months, Lily was not walking or talking. Again we brought her into a paediatrician for a check; our concerns were largely overlooked, unfortunately.

In April 2014, Lily was 21 months; she wasn’t speaking, she wasn’t walking, so we got a referral to see a neuro-development consultant.

In June we had a two to three-hour observation with this neurodevelopment paediatrician.

At the end of our appointment when she was diagnosed as ‘at high risk of autism spectrum disorder’ – because at that age they won’t give a diagnosis – one of the observations that was made was, ‘your daughter has no meaningful interaction with you’. As a parent that’s a particularly painful thing to hear.

From my experience with Lily, that’s the hardest piece. The very building blocks of what we understand as human relationships – people wanting to be with you, interact with you, look at you – those pieces were missing for Lily. So when she started her aggressive therapy treatment, one of our early goals was that Lily would look at us for one second and that with a preferred toy she’d engage with it for one to two seconds – that’s how limited her attention and skill set was.

Through a bit of luck and a lot of hard work on behalf of her therapy team and us as parents, she’s come a significant way since that initial diagnosis to where she is today.

Do you feel that Lily and you as parents receive the support you need?

Unlike some other disabilities, sometimes you would know about this as a parent from the day your child is born, but this is a journey. It took us two years to realise Lily has a specific set of challenges, and since then I’d say it’s taken us another 18 months to really understand when we talk about autism what that means for Lily.

Another challenge with autism, compared to say a clinical diagnosis or health condition, is that all the responsibility – identifying the right therapist, deciding which balance is right for your child between speech and ABA – lies on the shoulders of the parent.

For me, the biggest challenge in those early days was: How do I find myself the right balance of services and the therapist themselves who I feel will give Lily the support she needs?

The condition isn’t currently covered under insurance in Abu Dhabi. At one of the typical centres here, a 40-minute appointment is about AED 450. If you calculate that the best practice for children in early intervention is a minimum of 20 hours a week of dedicated therapy, you can start to understand the magnitude of both the emotional and financial burden this places on parents.

We are uniquely fortunate to be based in the UAE: I think the diversity of people, cultures, religions and backgrounds makes the average person here more accepting of differences.

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Was it a challenge finding a school for Lily?

My daughter is integrated into a mainstream classroom at an international school in Abu Dhabi but we fund a fulltime support teacher for her.

Our family has done a significant amount of work for Lily. Lily applied to 16 schools in Abu Dhabi – for each I did site visits to see if they had a special education support department… She was rejected from all of those schools except two and in those I requested a follow-up meeting with the principal to discuss my feedback on their support and attitude for children with special needs.

I also think my family’s attitude is unique in that my position with those schools was that it was our responsibility as a family to ensure Lily has all the support she needs to be integrated into the classroom, and not the additional burden of the school.

It’s a complex issue because the schools say, ‘Once we accept a child, by ADEC mandate we cannot ask the parent for a shadow teacher… We’re not given additional funding for children with special needs’. So there’s not the level of support for the schools themselves to offer more places to non-traditional students.

There’s certainly room for more support from the government and the schools themselves, but I think we can’t ignore the role that parents and families play to ensure their child is optimally equipped to be successful in a school environment.

Lily brings so much value to anyone she interacts with. I’ve never seen someone who brings out the kindness in other people, the compassion in others and who inspires others purely in her tenacity to learn and integrate herself in an environment that doesn’t come naturally to her. She’s been a huge asset to her holistic learning environment and that’s something I’m fiercely proud of.

What about outside the classroom – do you feel people are unsure of what autism is?

I think there are so many misconceptions about what autism is.

When I say Lily has autism, I’ve had people say ‘No she doesn’t’, because she looks normal. Or ‘No she doesn’t, because you and your husband are so capable and intelligent’ or ‘That’s okay because she’ll grow out of it or she’ll grow up to be a neurophysicist’. All these have been taken from movies and are examples of people who are diagnosed with autism but are super intelligent but by and large that’s not the majority.

Usually people take a quick glance and make a quick judgement. My encouragement is for anyone in any situation to spend more time trying to understand.

Do you think Abu Dhabi needs more support services?

There’s certainly not enough access to quality therapy and support. There’s also a huge financial burden that families face; I don’t think financial resources should dictate the amount of support children receive.

I do think, from an educational perspective and in terms of community after-school activities and resources, there needs to be more because the ultimate goal for people with autism is to have them integrate as much as possible into normal peer groups.

The UAE is always doing things for children with additional needs like autism awareness month, so I think the attitude of support is there but possibly the implementation is not.

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Do you have any advice for parents who are going through early stages of diagnosis?

You have to stay focused, keep going after resources and asking questions for your child until you feel comfortable with the support you’re getting. You’re never going to have all the answers and while I think it’s important to do your best to provide an infrastructure for your child, you also need to look after yourself and your family.

While Lily’s therapy is a huge part of what we do, it doesn’t define Lily, it doesn’t define our family and it doesn’t define who I am as a person. And when I see people struggling is when autism becomes everything about who they are, and it’s difficult not to let that happen.

It’s about appreciating the unique things your child can bring to your family and the world and viewing it as providing them with the best infrastructure possible to achieve their potential and having the flexibility to say ‘it’s a journey’.

To read more about autism awareness in the community, click here.

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2 thoughts on “One parent’s personal story of living with autism

  1. Kim maples

    Wonderful family and a wonderful article. My heart is blessed by the care and work Laura and David do for their daughter and always praying for more openings and schooling for Lily. She deserves the best

    Reply
  2. Shoaib

    Having known Deitz family personally for last 4 years, I always get inspired and impressed with the hard work David and Laura has been putting in. Lily is a wonderful girl and deserves this.
    I sincerely hope that as more awareness spreads about Autism, there would be some intitutionalized approach offering dedicated and specialized services and support in the region.

    Reply

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