Lilia’s Autism Journey

Lilia’s Autism Journey

‘The suddenness of it was shattering’

I did not know much about autism, or any developmental abnormalities for that matter, so up to the age of three we thought there was nothing particularly wrong with our daughter Lilia. She was not a good sleeper, had lots of eczema, chest and ear infections, and was terrified of loud noises and live music, and indulged in a ‘mad dance routine’ (which, as we learned later, qualified as a repetitive self stimulatory behaviour). We also later learned that those early signs and symptoms – those toddler health problems like allergies and infections are linked to autism.

Lilia was also was partial to a snack of playdough, glue, sand, soil, or anything inedible that she could put in her mouth, long after all her teeth appeared.

She did not have the usual baby banter, but instead recited her favourite books and long poems by heart.

Instead of playing with toys, she preferred books; she would read for hours and insist on us reading to her endlessly. The GP and health visitors told us she was perfectly OK, we did not worry.

Then we happened to be overseas for Christmas with a particularly nasty spell of ear infections and saw a doctor. The system is different to here, so when a child sneezes, you see a qualified paediatrician. She sorted out the ear infection (by an industrial dose of antibiotics) and told us that our child was developmentally delayed. Obviously, we did not believe her – Lilia was bright, she could read and count, and was good at all academic parameters suitable for her age.

Still, the doctor said we’d better check her out. We did, and got a referral to a paediatrician in the UK. The paediatrician had no doubts – Lilia had autism – talking about the ‘triad of impairments’ Lilia has all the classical symptoms in social interaction and communication, and her ability to use language for communication was practically non-existent.  She can read and count? – this certainly points to autism.

The doctor told us bluntly: “Your child has a disability for life. There is no cure, but you will have support in the community”.

To say that we were devastated is an understatement. The suddenness of it was shattering – one minute you think you have a normal child with a bright future, and in an instant you are told your child will have no prospect of ever leading a fulfilling and independent life.

It was just as hard for my husband, but he went out to work every day, and I stayed at home with Lilia – we could never leave her with a babysitter, as she screamed if held by anyone other than my husband, my elder daughter and me, from the age of a few weeks old, so I had no respite. I was looking at her and thinking about this every second of every day (and many nights), all consumed by grief and despair.

Autism as a whole body disorder

We started action straight away. All official sources we turned to told us that autism was untreatable and incurable. This was too hard to bear, and I refused to believe it. I opened up internet, read a few books and started action.

We tried everything that was available. There was no time to lose – if a child misses vital stages of development, they may not be able to catch up on them later, so it is important to start intervention as early as possible.

It made sense to me that autism is a whole body disorder. Sleepless nights and upside down immune system and GI problems that go together with social and communication issues – this was our case.

Amongst the first things we tried was a nutritional intervention programme. During our first meeting with a nutritional therapist it was explained to us that in most cases autism was caused by underlying medical conditions which are treatable, therefore, it is possible to treat and in some cases even recover from autism.

This was such a welcome revelation after the hopeless NHS approach of a disability for life! The practitioner took the time to explain in detail the correlation between genetic and environmental factors in the escalation of autism and gave us an understanding how to change our lifestyle to minimise Lilia’s exposure to factors that make it worse. He was the first person who gave us hope and aspiration for a better life for Lilia. We did the tests and started the intervention programme.

The effects were not immediate, but we saw a steady improvement, month by month, in all areas of Lilia’s condition, which is continuing to this day.

Re-gaining age-appropriate play skills

At about the same time we started our ABA programme. We had neither time nor resources for a full scale ABA programme, and initially were put off by big companies like PEACH who recommended 20-40 hours a week. Then we came by a lady from Scotland who said that such a programme will be beneficial, even if we can only do a few hours a week (we never did more than 15 hours a week, and generally it as about 10), and her Denver approach was better suited for a high functioning child like Lilia.

We were extremely lucky to find the best ABA therapist we could ever hope for. Oana immediately established close contact and understanding with Lilia, and turned her around in a matter of months.

The first thing that Lilia was taught was to ask for things. Unless you know an autistic child, you will never understand what it means to have a three year old who never says ‘I want’ and then to experience an incredible joy when the child finally says it!

Within a couple of months Lilia could express her wishes verbally. The paediatrician told us she had no play skills – in a few months her play skills were almost age appropriate. Every academic target on the programme was reached within weeks, language and social skills took a bit longer.

Our biggest challenge at the age of 4 was to get Lilia into a nursery. She had extreme separation anxiety and if I left her in the nursery she would cry as long as she was there. We tried 4 nurseries and after a settling in period of about 2-3 months we were told ‘It is better is she does not come here’.

It was heart breaking for us and for Lilia.

That was until we found the Little Smile Nursery. They agreed to take our therapists to help settle Lilia in and followed their advice on how to deal with her. By then we had an excellent ABA team and they tackled this problem head on. Social stories, replay scenarios, books and all other means implemented by experienced and caring people had their effect; very soon Lilia was happily settled in the nursery. Then the ABA team and nursery staff tackled toilet training – it took a bit longer, but by the time Lilia started school she was happy and confident in a school environment, free from major behaviour problems.

Our charity is run by parents and we value parent experience. We encourage parents to share their stories. Parent experience cannot be viewed in any way as medical or therapeutic advice. Each parent story is just that: one account as shared by one family. Your family’s experience may be completely unrelated.

Overcoming many other challenges and difficulties

Our ABA programme, which has always been the Verbal Behaviour type, incorporates all aspects of Lilia’s development. As she had considerable fine and gross motor skills problems, occupational therapy was very important. Having no luck with the NHS in that respect we had private sessions at the Hope Centre and the input from these weekly sessions was incorporated into the ABA sessions at home. When Lilia started school and could not come to their gym any more, their knowledgeable therapist Bernadette came to our ABA sessions to give advice to our therapists.

We also had excellent speech and language therapy sessions there, but only for one term – they discharged us after that, due to the immense progress Lilia made during that time! We found that standard speech and language therapy, as offered by the NHS, was not effective for Lilia, it worked better when it was a part of the ABA programme, or ABA approach was part of the speech and language therapy. When Lilia started school the Speech and Language Communication Unit that she was in had a remarkably good speech and language therapist and we discovered that the materials and methods she used were the same as we used in our ABA sessions.

I attribute the effectiveness of ABA programmes to the individual approach which lies in the foundation of this method. The consultant looks at weaknesses of each autistic child and advises on ways and means to deal with his or her problems in a way which works for this child.

For some children the traditional Lovaas approach will work better and for some, high functioning like Lilia, the Verbal Behaviour branch provides a multitude of opportunities to enable her to learn to deal with her problems herself, adequately preparing her for independent living.

This flexibility, combined with extensive and specialised training of consultants and therapists makes the ABA approach an ideal learning platform for any child with autism. It has the flexibility to incorporate within one programme  any type of interaction needed for a particular child, for example in our case; OT, physical exercises, speech and language therapy etc, thus taking this approach beyond an educational intervention to improve all aspects of the child development.

We are trying to expose Lilia to as many experiences in life as possible. Lilia is learning to play the piano and goes to lots of music concerts, which help a lot with her auditory processing disorder. She does ballet and gymnastics and has an extensive exercise programme to help with gross motor skills.

Her love of books and excellent memory allows her to enjoy a wide variety of subjects – from history to geography and languages, going to museums, dancing, sports, travelling, going to the theatre and every child event in London that we can go to, time permitting – autism has never been a barrier to fully enjoy the many opportunities for children in London.

Lilia is bilingual – but prefers English. We go overseas to see my parents twice a year and I want Lilia to be able to communicate with them and our friends there.

Health wise, we had a major breakthrough when we started gluten, casein and sugar free diet about a year ago. Previously, at the beginning of the nutritional programme, we tried the gluten free diet and did not see benefits. However, our new nutritionist advised to stay away from casein and soya, as well as sugar, and the results were spectacular. Lilia started sleeping through the night – previous sleep has been a big problem for 5 years. Her allergies improved, repetitive behaviour disappeared and we saw major positive changes in all aspects of her behaviour.

Currently our ABA programme concentrates on Lilia’s communication skills and social development. Our therapists are highly inventive to make the sessions exciting and motivating for Lilia. Our consultant explains to them – and to us – how Lilia thinks, why she does the things she does and how to help her develop the skills she needs to enjoy a happy and fulfilling life as a fully normal member of the society. At our last meeting he said that apart from a few issues coming from emotional immaturity Lilia has no other major autistic traits. Lilia started school at the Speech Language and Communication Unit which is part of a mainstream school and is now working towards being in the mainstream setting with minimum support.

In the beginning of our journey through autism, when we started going to the Hope Centre (it works with all disabilities, not just autism), there was an inscription on a sign in their waiting room: “Do not accept me as I am – I can change”. I took courage and consolation from that sign. This phrase played a big role in my coming to terms with Lilia’s diagnosis and finding strength to run a treatment programme for her.

The hardest thing for any parent is when there is no hope for a better future for your child. This does not have to be the case for autism! There is a lot of research going on, primarily in the USA, which proves that it is treatable, these children can be happy in our society if they receive the right intervention.

There are a lot of options available. Play therapy, music therapy, listening programme, speech and language therapy, yoga, homeopathy, cranial osteopathy – we found it all helped. However, for us it was the combination of the nutritional programme/diet and ABA that had the biggest impact.

We still have a few problems to overcome, in terms of Lilia’s social communication and medical issues, but the progress we have made so far gives us hope for the best possible outcome – recovery from autism.

This was our journey through autism. It could have been easier if the authorities, who give us support, gave parents access to those options, particularly the nutritional interventions and ABA. Paediatricians and Outreach Autism Teams have the power to start parents and their kids on the road to recovery from autism –  will they use that power?

Written by Lilia’s Mum

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