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Submitted by PatientsEngage on 25 August 2015

Margaret and her family moved from one continent to another in search of a better life for their autistic son. Here, their life-changing story – a testament to what the right kind of support can make possible.

When was your son diagnosed?

Brian, who is 19 today, was diagnosed in his 3rd year. We consulted two consultants to confirm the diagnosis, though it was quite obvious. 

What were the early signs/symptoms?

We adopted Brian when he was 3 weeks old and all his physical milestones were normal or quicker than normal – e.g. he walked at 11 months.  He was also speaking as normal until he was 15 months. But gradually we noticed that he had stopped responding to any of us. 

Initially we ignored it as being just him being absorbed in his activity (or couldn’t be bothered attitude :)), but later realised that he was not giving us any eye contact either.  By around 18 to 24 months, he had moved from being a happy child, full of life, to not speaking at all, crying incessantly and throwing tantrums without good reason (or that’s what we thought at the time!). He also began to flap his hands and become stressed at any change around him, including the advent of his sister a few months before his 3rd birthday. This was an alert. Fortunately having a social work background, I had a bit of knowledge of autism and realised that this was Brian’s source of problems.  So we booked an appointment with a Psychiatrist, who diagnosed him as soon as we walked into his practice.

What sort of treatment/therapies have you tried? What worked, what didn't work?

We began by getting an occupational therapist to work with him 2 to 3 times a week, and later got a nursery teacher to spend time with him using play methods to get him to do things. While there was some behavioural change, the progress was very slow. We also tried some sensory work with him in Mumbai, check his mercury levels but there was little change.

By the time he was three he had become very hyperactive. His tantrums increased and he remained incontinent. While there were special schools in Mumbai, most of these were quite far away from us and it was not possible to travel back and forth with him.  We could not afford to move to that part of the city due to our low finances.  He went to a special school but though he was well cared for and loved by his teacher, the school had no resources or expertise with Autism.  They were geared to physical disabilities.  

This is when we realised that we may need to move overseas where we had heard that special needs services were much more developed. Hence after a year of job hunting (as it would be impossible to go without a job), we gave up our jobs in Mumbai and moved to the UK. This was soon after Brian had turned 5. 

Brian started school at an autism base of a wonderful special school. This was the start of a new beginning for Brian. With brilliant teachers and team work between school and home and supported by social workers, occupational therapists and other health professionals, 

Brian’s challenging behaviour was brought under control. The first breakthrough was when Brian become continent at about the age of 7, which was such a relief. The first two years in the UK were very challenging due the change that Brian had to get used to. We, too, needed to adjust to a completely new culture in the North East of England. But everything became worthwhile as his behaviour became more positive and the tantrums reduced considerably. 

What was the biggest challenge - both for you and him?

For Brian it was everything – a new country (he loved his grandparents, loves India, loves his family back home!), new faces (of different colours, difficult accents), different ways of doing things; so he struggled for a while – in fact some of his behavioural problems got worse in the first year, but began to settle once he felt more confidence in his surroundings and his teacher. 

We had several challenges with Brian.  He was extremely hyper active, threw tantrums frequently, had no sense of danger (e.g. crossing the road), and wanted to get into any water body he came across. He would sleep very little, so we had to catch up on sleep when we could. We had to keep a constant watch over him, keep exit doors locked so he would not disappear, think a lot before planning any outdoor stuff, and avoid visiting new people in their homes, even more so due to his incontinence. 

Travel from the UK to India during the summer was highly stressful as the change was difficult. Sitting on the plane for 8 to 9 hours was hard and often we had to be patient when co-passengers got upset with his behaviour. It was difficult keeping him busy on the plane and we never knew whether he would throw a tantrum. My job included overseas travel and that was difficult as I had to pack at night when he was asleep and prepare him at the last minute, or he would get very distressed.  

His tantrums could come at any time. The cause of it could have been something that had happened in the morning, but it could erupt at night. So we had to quickly think back as to what may have caused it to happen (normally linked to food that he may have been deprived of, for example, his sister opening a biscuit packet that was his). Each tantrum lasted for about 45 minutes, which was stressful particularly if it was at night as we were afraid of disturbing the neighbours.  While he is a thoroughly gentle soul and would never hurt someone, when he is distressed, he would jump vigorously and slap himself. Most of the time his dad bore the brunt of his frustrations as he wanted him to be there, gradually coaxing him back to normality.

At puberty he additionally began having seizures and had to be put on medication for epilepsy though the diagnosis has never been confirmed. After a couple of years the episodes disappeared, and after another year or so we phased out his medication, too.  

Unfortunately last week he suddenly had two major seizures one after the other, due to which he is now back on medication and we are waiting further diagnosis.

How has this affected his sister? 

We have a daughter who is two years younger. She had to grow up quickly due to the lack of full attention.  We were constantly drawn away by Brian and then too tired to do anything with her. Though she understood the reasons and adores her brother, it was very difficult for her and she constantly claimed that we loved Brian more than her, which was difficult to refute – if you link time spent with the child as an indicator.  But she has now grown into a wonderful teenager, too.

How did you find the time to spend with her?

We managed to get Brian into respite care once a month – when he was either away for the weekend or for 4 nights during the week. This time was exclusively for our daughter doing things that she wanted to do. Also between my husband and myself, at least one of us tried to focus on her when Brian was home. We also registered her as a young carer so she had opportunities to meet and interact with other young carers, go for outings, and get support.

What is the situation now?

Today Brian has turned out to be a wonderful young man – gone are the tantrums, the hyper activity. We no longer need to watch him. He is doing well in school and is now ready to go to college to learn more independent life skills. He is very loving, enjoys people in general, loves parties, and loves being outdoors walking. He is now conscious of danger and will not allow us to cross the road if the light is red. He is quite independent and does most things independently. He is very helpful around the house, too.  The only thing missing is that he has no speech. But he has been trained in Makaton (sign language) and PECS (use of cards) and uses either to communicate effectively.

The return of the seizures is a worrying development, though we hope that the medication will help.

What have you learnt along the way?

We have learnt a lot – primarily patience, an ability to understand Brian and his behaviour. The key thing is to get a diagnosis quickly so that intervention can happen quickly. Accepting that your child is not like other children is hard for parents to accept and people do tend to dissuade you from seeking help – ‘oh he is a boy, he will talk later, or ‘so and so had this problem and he is fine now’, etc. etc. We know that we should seek help when we need it. Respite care has been hugely helpful for him as he is able to live with and trust other carers, and this gives us a break to focus on our daughter or just relax. 

We have also learnt the importance of partnership in the change process. Without teaming up with the schools (initially the primary school and later secondary school) and a range of other professionals (social worker, health professionals, occupational therapist, speech and language therapist), we would not be where we are. Understanding the British Welfare System has also been very helpful. We work closely with his social work and transition team (supporting the move from children’s to adult services) to ensure that Brian is supported.  We have learnt perseverance and remaining calm when crisis hits (tantrums, seizures). We interact with other parents who have similar problems and this is very helpful.

In general in the UK the awareness and understanding of autism is much higher so it is easier to cope with a child with special needs in public spaces. While we were in India this was very difficult as people did not understand what autism is (much more awareness now), so children get labelled as being spoilt and parents criticised for their weak parenting skills, which is really frustrating. But things in India seem to be changing, too.

What do you wish you had known before?

Early intervention - the real work with Brian began only when we moved to the UK, which was when he was 5 years old.  The earlier you begin, the more you can achieve. The other is having access to information on services like a ‘one-stop’ window – so you can make choices rather than running helter-skelter, trying this, that and everything in the hope that something will click.

What kind of assistance/treatment/support is available (in UK and in India - if you are aware)

The UK has a number of services for children with special needs – good educational opportunities where the ratio of child to teacher is very low so as to be able to give individual attention. Despite the changes being brought to the Welfare systems where cuts are being made in terms of finances, there is support available from a range of professionals who can work together to support the child and the parents.  

UK also has Carer organisations in every borough, where the work is focused on providing support (including respite) to the carer – rather than the cared for person.  These services allow carers to take a break at regular intervals, do different things (outings), learn new skills or even enjoy some pampering services. Support groups are also available where parents can share their experiences and learn from other parents.

I don’t know very much about services in India but I am aware that parents themselves are coming together to find ways of tackling the problems and challenges that they are facing. Some cities I think have more services than others – Mumbai, Bangalore, and Delhi.  But the pressure on services is very high as more and more children get diagnosed.

How has life changed for you?

Life is what it is; we have to accept it as it comes. Our life centres around Brian and his needs rather than our needs. I recall when we planned to adopt the only criteria I had was that I wanted a girl child and one without any disability! Strangely, having Brian has been the best gift of all. I believe that not all of us have the inner strength to care for a child/person with special needs – so we consider ourselves privileged to have been called to do this and we will be eternally grateful for this privilege.  

The biggest change has been the move from India to the UK, which we would have never done if Brian did not have severe autism. We have adapted to a new culture but do also ensure that neither we nor the children lose our Indian identity.  Life is also so much better now with the changes we see in Brian. Like normal families, we cannot just go anywhere – everything needs to be thought through from the eyes of Brian and what would be good for him or what he would like – where he would be most comfortable (and therefore so would we). But we are happy.

Any advice for other parents in your shoes?

It is difficult to advise other parents as each family will have a different circumstance within which they have operate and find solutions. However, as I suggested earlier, it is important to accept that your child is different. The sooner we accept our child as they are, the sooner we can begin to look for support, rather than live in denial. Autistic children are so special – they give you so much love in return for the support you provide them and that is so comforting.  

The other thing is that we need to be willing to take risks with giving the child independence. Over protection of a child with special needs is a huge danger which can be crippling for the child – so we need to get him or her out there, enabling them to experience life as much as other ‘normal’ children – you will reap the benefits as the child gets older and become more independent and develops life skills. Where services are not available, parents themselves can come together and do things, set up services, respite.

Respite is critical; we should not be apologetic about opting for respite even if it is daytime care. Re-fuelling ourselves with some rest and/or pampering increases our confidence to come back to our caring role with much more energy. Being members of or even setting up support groups where parents can share their experience and feel supported is really useful.

Anything else you think is important to say?

Life is not easy when you have a child with special needs but life is beautiful and humbling. I believe that only some parents are called upon by the Almighty to take on this responsibility and we see it as a privilege that we are the chosen ones. Reaching out for help and support is important, giving the child as much exposure as any other child is important – letting him or her do a variety of things rather than shielding them from the public eye will make the child a much more independent person.

Margaret (names changed to protect privacy)

July 2015

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