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The Autism Debate

Raising awareness for disability is what my blog at Marley and Mum is all about. Sometimes though it is important to remind people about the importance of raising awareness for disabilities which aren’t so ‘visible’.

Despite the kindness and compassion I see from the different communities here in Portugal, this country is massively behind in terms of comprehension of mental disabilities and behavioral problems. My son Marley is on the spectrum caused by his genetic disorder and global delay. However mild his behavioral tendencies are does not mean we have not had our fair share of discrimination. Staring, whispering and many comments related to his upbringing and whether I should just smack it out of him... Leading my safely to say this is an area of disability I’m very passionate about raising awareness for.

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One of the biggest issues I see being unspoken of is autism, or autism spectrum disorder. This refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication as well as by unique strengths and differences. There are many types which are caused by different combinations of genetic and environmental influences. Not something sent to punish us or a lack of education... which is what I’ve also heard here! The term ‘spectrum’ reflects the wide variation in challenges and strengths possessed by each person with autism.

Autism’s most-obvious signs tend to appear between 2 and 3 years of age. In some cases, it can be diagnosed as early as 18 months. A whopping 1 in 68 children are estimated to have autism. One third being nonverbal and another third having an intellectual disability. Certain medical and mental health issues frequently accompany autism. They include gastrointestinal (GI) disorders, seizures, sleep disturbances, attention deficit and hyperactivity disorder (ADHD), anxiety and phobias.

For most parents with a child on the autistic spectrum they try and remain optimistic about their child’s future however the lack of support and understanding in Portugal can make them emotional and fraught. Speaking from experience with having a child with cognitive and behavioral limitations it is very hard to remain hopeful to what the future holds with no system in place in regards to support. Which is what I hope to change over time.

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From my experience I wanted to pass over some advice I have to parents of children with similar issues and also the general public so they can understand a bit better. Children on the autistic spectrum can often not appreciate physical contact. It’s tactile defensiveness, not a lack of love that makes some kids on the spectrum resist hugs and kisses. Don’t force yourself on anyone but certainly don’t take offense to a child avoiding physical contact if they are on the spectrum. Often eye contact is also difficult so practicing communication can sometimes be helpful.

Children on the spectrum often really appreciate routine and don’t welcome change. It’s an important factor to bear in mind when entering the wide, wacky and wonderful world of autism. Some things you take for granted in the way you interact with people sometimes need to be changed. I found it hard changing my sense of sarcasm with Marley for example as it just gets completely lost along with figurative language...

With very little help and assistance here which is what I want to focus on it is important for families with children on the spectrum to not allow their unit to become isolated. Make sure you get out and enjoy other people’s company and not care what people may think. Your expectations will change, for the better. It is so hard at first but you need to look at things in a positive light and embrace it.

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Clare Rowe who used to be a resident in the Algarve, knows just how I feel. She says the biggest difficulty about life with son Riley is the negative attitudes of others. Her son has moderate-to-severe autism, and is largely non-verbal, but dealing with the realities of his condition are made so much harder when dealing with the unkindness she encounters from strangers who decide for themselves that he is simply a ‘badly behaved child with an inadequate mother.’

‘I have a 4 year old boy with severe autism spectrum disorder commonly known as ASD with significant language delay. He will use vocalizations although not any spoken language as yet, he is classed as non-verbal. His understanding of spoken language is very limited and has no awareness of danger around him, which causes daily challenges. He finds it hard just walking down the road without running (bolting) to things he finds more interesting, this means he has to be strapped in his buggy at all times when we are out to avoid this danger.’

Clare and her family ended up having to move back to the United Kingdom because of the lack of support she had here. It was simply impossible for them to continue living in Portugal. ‘Since we have returned it’s been nothing but positive. When we arrived back in England we had his health visitor 2 year check where they referred him to audiology and when he failed his hearing test he was referred to a community pediatrician for more investigation. Once seeing the community pediatrician he expressed his concerns and told us he was autistic.’ Just this is an enormous pass taken as in Portugal there is no way they would have a diagnosis even now. I know for a fact the hearing test machine in both Portimao and Faro hospital has be broken for over a year!

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In the Algarve there are no specialist schools for preschool or primary school children with problems like Riley. Since moving back to the UK he has attended a specialist preschool which Clare describes as, ‘the best thing ever as they started teaching our son so differently but so much more effective.’ The specialist preschool uses a PECS (picture exchange communication system), visual support, visual timetables and Now and Next boards so Riley knew what was coming next at all times as autism is a prediction disorder. Now at 4 he has moved to a specialist school for a EHC (Education, Health and Care plan) through their local authorities and he is thriving. This is just unheard of in Portugal!

I feel like this is where most families in Portugal’s anxieties are based on. No one knows what will become of their children. What hope they may have with no decent support system in place? A lack of education of the general public massively effects Clare also, ‘I would also say another very hard daily challenge is that our boy looks so neuro-typical or “normal” when he has meltdowns or sensory overloads the general public can be very rude or uneducated as they think our children are just naughty when actually they are going through hell with loud noises, bright lights, strong smells. 

Keep strong our boy is making progress just a lot slower than children of his age group. Celebrate small steps.’

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There are so many families who are finding coping with the system implemented here very difficult. Gemma da Silva is one of them who’s son Zac has high functioning autism. To most people he looks completely normal and Gemma has had a very difficult time trying to implement a support system for him. At present Zac is refusing school and the school are trying to ease him back in gently, but this means being placed in a class with children with severe developmental delays whereas Zac has an incredible cognitive ability. This unfortunately doesn’t help in encouraging him back into school.

Gemma has had a very difficult time getting understanding within the school setting and it has taken years to get him ‘sinalizado’, the equivalent to SEN in the UK. Meanwhile she was told he needed stronger discipline such as smacking and her parenting was the cause of the problem. ‘Often his meltdowns are a response to people not knowing best how to handle a child with autism, for example you do not restrain them if they are in fight or flight mode’. Strategies could easily be implemented with better training for educational professionals to enable them to adapt to autistic children.

Gemma would like to see different syllabuses where learning is lead based on what the children’s interests are so they can tap into that. Gemma goes on to say, ‘I would like there to be more acceptance of homeschooling when school is having such a negative psychological effect on children and there needs to be an alternative form for children who don’t function in a normal state school. Autistic or not.’  

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Currently I am going through a very time consuming process with my son Marley as he gets back on his feet. Spending so much time in hospital though has made me have a lot of time on my hands to think about how we as a community can help families in need in the Algarve with children with a disability that might not be so visible. I am working hard making connections to see if there is something that can be done in the future and it is my dream to be able to open a center to benefit my son and all the other children with disability in the Algarve. Watch this space...

I wish I could tell other parents that may be reading this article I have the answers they need. But I don’t even have the answers for my own journey. Our children will continue to grow and change and will surprise us by doing things you never thought possible. So we must remain hopeful and also be proactive in creating as many opportunities as we can. Success won’t be measured by academic performance or job placements necessarily so fill your life with the small pleasures. Let’s work together to make life better for each other as after all our future should look like the best parts of our present.

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