In 2016 a policy advice report by the National Council for Special Education on Supporting Students with Autism Spectrum Disorders in Schools, noted that 1 in 65, or 1.5 per cent, of the schoolgoing population in Ireland had a diagnosis of autism. What is autism? This is a complex question with many definitions, opinions and answers, about which many thousands of books and PhDs have been written.
The Oxford Dictionary defines autism as “a mental condition, present from early childhood, characterised by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.” Autism is a complex, invisible condition which a person is born with, which means that the way a person communicates, interacts and understands other people, and the world, is different to those who do not have the condition. It is characterised by challenges with social skills, repetitive behaviours, speech and non-verbal communication. However, while people with autism, including Asperger’s Syndrome, share certain characteristics, they will be highly individual in their needs and preferences.
Under recent reclassifications of different types of autism, all of the following conditions are now encompassed under the umbrella classification “Autism Spectrum Disorder” (ASD). The three most common forms of autism in the pre-2013 classification system were Autistic Disorder — or classic autism; Asperger’s Syndrome; and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) with Autistic Disorder the most severe, Asperger’s Syndrome or high-functioning autism, and PDD-NOS, or atypical autism, the less severe variants. Some children have other difficulties which are not directly related to their ASD, such as dyspraxia, dyslexia or attention deficit hyperactivity disorder (ADHD), but can occur alongside ASD.
But no matter what doctors, teachers, and other specialists call the autism spectrum disorder, it’s the child’s unique needs that are truly important. No diagnostic label can tell exactly what challenges the child will have. There’s a saying popular among people with autism and their families: “If you’ve met one person with autism, you’ve met one person with autism.” The condition affects everybody differently, and people with autism, just like people everywhere, have all sorts of individual personalities, tastes, outlooks and beliefs. Autism can impact on a great deal of someone’s life and experiences, but it’s never the whole story about them. No two people on the spectrum are affected in entirely the same way.
For many parents who hear that their child has autism for the first time, searching the web presents a large quantity of information which can make overpowering and difficult reading, and much of the information online is about services abroad unavailable to Irish parents. The diagnosis can be intimidating and parents are sometimes unsure of where to turn or what to do. Panic, fear, denial and anger are common reactions. Some families feel that they need to grieve the loss of the child they thought they had. This process is an important part of accepting the child’s diagnosis, and it can take time. Some family members react better than others and this too can be a strain. All parents say that what really helps is talking to other parents of children with Autistic Spectrum Disorder. Voluntary organisations, charities and parent support groups provide a broad range of support, and can help families to find out how services work in their area. They can also help with practical things like applying for financial help and benefits. Many families stress how important parent support groups have been to them. These groups provide early support, advice, information, and to some extent, a social life.
No two people on the spectrum are affected in entirely the same way.
Autism can now be diagnosed as early as two years for those displaying many symptoms. But the journey often starts when parents begin to notice that their child is a bit different to other children of the same age, a bit “off kilter”. As a baby there may be little or no babbling, no pointing, gesturing, showing, waving. Maybe their child starts to lose speech skills at a time when other children’s speech is “exploding”. Perhaps they learn little or no language at all. (Children like this are referred to as being “non-verbal”.) In some cases, it may be learning speech early with an impressively advanced vocabulary but possibly being inflexible, pedantic or literal-minded with it. Or if they do speak, it may sound monotone or stilted. Social interaction can be a problem, where the child avoids eye contact or persistently prefers solitude. They may not respond to efforts to engage them, not turning when you call their name, wandering off while you’re speaking to them.
Many children, young people and adults with ASD also have an over–sensitivity to sound, smell, touch, taste and visual stimulation. Certain sensations are either experienced as if they’ve been turned way up or way down. This hyper or hypo sensitivity of the five senses can be exhausting and distressing for the person, causing them to act out, or to retreat into themselves. They often complain of things being too loud, too bright, too fast, too tight. They may eat only very specific food, often find open spaces hard to process, or can have a high pain threshold.
It is not surprising then that children with such characteristics experience many behavioural challenges. Since their world is so confusing, they may try to cling to a few things which they do understand, such as keeping to the same routines and becoming attached to certain toys or objects. This can make life very difficult for the whole family, since the child may insist on everyone else fitting into his/her demands. Children with autism may be frightened of quite harmless things, and on the other hand, ignore real dangers. They have less than normal understanding of social requirements and often behave in a way that might seem inappropriate.
Many ASD children have difficulty making friends, not knowing how to join in games, or being uninterested in or sometimes frightened of other children. Alternatively, they try to make friends but don’t manage to because their efforts seem “off” to the other kids. They may not understand the concept of personal space and struggle with taking turns. Other difficulties may include meltdowns and tantrums, an inflexible need for sameness in routine, apparent aloofness, lack of interest in other children and what the other children are doing. Behavioural challenges may include spinning, rocking, hand flapping, inappropriate laughter or tantrums for no apparent reason, obsessive compulsive behaviours, ie lining up objects or repetitive odd play for extended periods of time, eg stacking blocks for a half hour at a time.
One very important thing to note is the fact that when a child has ASD it has nothing to do with the way that the parents have been looking after him or her. The cause of Autistic Spectrum Disorder is not yet known, but what is certain is that it is not caused by parenting. Parents of people with ASD are just like everyone else. ASD affects people from all walks of life and in all countries and cultures. It doesn’t discriminate.
Also of vital importance is the scientifically proven fact that vaccines do not cause autism. That belief has been completely discredited. Autism Speaks, the world’s leading autism science and advocacy organisation has stated, “Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism. We urge that all children be fully vaccinated”.
The cause of Autistic Spectrum Disorder is not yet known, but what is certain is that it is not caused by parenting.
The earlier children with ASD get help, the greater their chance of treatment success. Early intervention is the most effective way to speed up the child’s development and reduce the symptoms of autism over their lifespan. If a parent suspects that their child might have autism, it is vital to get informed as quickly as possible. The more they know about ASD, the better equipped they’ll be to make informed decisions for their child.
If the common traits mentioned above are evident, it is advisable to seek the advice of a professional early on. Watching and worrying about a child, but not seeking help is very stressful. Many children will have unusual quirks, sensitivities and ways of behaving that may be considered not typical or unusual – this does not make them autistic. And remember it is a spectrum. So parents should record their concerns, and try to figure out what triggers their kid’s challenging or disruptive behaviours and what elicits a positive response. What does the child find stressful or frightening? Calming? Uncomfortable? Enjoyable? Diagnosing ASD can be difficult, since there is no medical test, like a blood test, to diagnose the disorder. Doctors look at the child’s behaviour and development to make a diagnosis, so the more information a parent has to hand to help the health professional reach a conclusion the better.
A multi-disciplinary team, made up of a psychologist, medical practitioner, school principal, qualified social worker and an appropriate therapist, will take a number of different factors into account. These include academic performance, behaviour in class and interactions with teachers and peers. Initially, if the child is still under the care of the local health centre, the parent can ask for a referral to a developmental paediatrician. If the child is older, parents can go to a GP and ask for the same referral. Or they can request the National Council for Special Education (NCSE), through the school, to undertake its own assessment. The problem in Ireland is that the waiting lists are long, so some people opt to have a private diagnosis instead. However, sometimes these private assessments are not recognised by the HSE. Parents report that it can take years to even get a diagnosis, vital time that could be better spent helping the child reach his/her potential. And for parents already under siege, it is cruel that so much time and energy is expended just to get the first foot on the ladder.
When the evaluation is finally done, the team usually meets with parents to explain the results of the evaluation and present the diagnosis and a treatment plan will be suggested. The ideal treatment plan coordinates therapies and interventions that help with impaired social interaction, problems with verbal and non-verbal communication, and obsessive or repetitive routines and interests. Unfortunately, such specialist care can be difficult to obtain in Ireland. Parents will have to be prepared to fight long and hard for the services their child needs. On the HSE website it is suggested that intervention should be intensive, that the child should be actively involved for at least 25 hours a week, twelve months a year. But many parents have had to battle for such support. Services here are limited and often parents have to resort to privately funding therapies and treatments.
For parents already under siege, it is cruel that so much time and energy is expended just to get the first foot on the ladder.
Some parents opt to send their child to mainstream schools, to participate as far as possible in the curriculum, but with additional supports and resources, while other parents wish to send their children with ASD to special schools which provide individualised education for their pupils, directly addressing specific needs and challenges. Parents can check the Department of Education and Skills’ online directory to see if there is an ASD school or unit in their local area. To locate which Special Educational Needs Organiser (SENO) covers their area, parents should check out the NSCE’s contact list. But regretfully there are not enough units for children with ASD, which means that some children are left without the support they need. Although education is enshrined in the constitution as a basic human right, the services in Ireland are stretched to their limit, resources thin on the ground, and parents struggle to get the services their children need.
Finding the right treatment plan for the child is vital and the parent should be involved in the process as they know their child best. A good treatment plan should build on the child’s interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the child’s attention in highly structured activities and provide regular reinforcement of behaviour. That is the theory anyway.
I spoke to Mark O’Keeffe, celebrity hairdresser, founder and MD of Sugar Culture, about the reality for his son Riley.
“Riley is almost six years old – handsome, mischievous, talented, energetic, loving, beautiful, funny … and autistic. He hit all his milestones on time; crawling at eight months walking at one and running, jumping and playing as normal. The only problem his mum Aimee and I ever noticed was his delayed speech, which we thought was a problem with his hearing. At almost three, the consultant told us his hearing was fine and suggested Riley might have autism. We had no idea what he was talking about. We quickly discovered we would have to navigate our own way through a mountain of information and a vacuum of services. Three years later, we are still battling. We kept on hearing that “early intervention” was vital, but the irony is that waiting lists for autism clinical services are literally years long. We were forced to go private for everything from diagnosis to speech therapy while we waited on state lists. We had the benefit of a wonderful pre-school in Donaghmede where Riley came on in leaps and bounds. Unfortunately his two years are up. We assumed he would be starting school this month, but there are no places for many children with autism in either special or mainstream schools. Parents like us are forced to fight for a school place for our autistic children: parents are protesting outside the Dáil, going on hunger strike, launching media campaigns and even going down the legal route.
“Riley is very clever, but he is non-verbal. He should be in an ASD unit, but there are no places for him. There are thousands of children like him in Ireland. Since I was left with no option but to go public in July with his school situation, I have had thousands of parents in the same boat as us contact me. It’s a national crisis. To add insult to injury, these children are taken off all state clinical support lists, including speech therapy, physical therapy, psychological and psychiatric support BECAUSE they are not enrolled in school.
“Riley’s behaviour is becoming more and more challenging because he is not in any organised academic system, where he thrives. Aimee and I are doing our utmost, but it is very difficult trying to deal with an autistic child’s day-to-day needs while simultaneously waging a war to get them their basic human rights. Aimee is a superhero, as I believe all mothers of autistic children are.
Finding the right treatment plan for the child is vital and the parent should be involved in the process as they know their child best.
“Riley is beautiful and perfect just as he is, and I would not change a hair on his head. I do not wish him to change to better suit the system, but rather for the system to change to suit him. Some children like Riley have been blessed with academic and creative superpowers and have the potential to be truly brilliant, but they need access to education and clinical support. With autism, when you are not progressing you are regressing. I have heard of children who have lost the ability to speak while outside of the school system. We have been fighting for years and we will continue to fight until Riley gets what he is entitled to.”
I also met a mother and her 19-year-old daughter, who told me their story. Catherine spoke about the huge worry and anxiety she felt when Coleen, her daughter with Asperger’s, started mainstream primary school. “Coleen was diagnosed early, so we were able to put supports in place for her. But I still worried massively when she left for school every day. Getting a diagnosis is a big learning curve for all the family. The family were perfectly comfortable with Coleen’s uniqueness but the other kids picked up on this. At that age it’s all about conforming and Coleen didn’t fit the mould at all. She was also dyspraxic, which highlighted some differences. She found it very hard to make friends and often got into trouble in school for playing rough, or having meltdowns. She had a lot of sensory issues. She used to say she was ‘red in the head’ when she experienced sensory overload and couldn’t cope.”
Coleen remembers being on her own a lot. “That was easier than being with people. I couldn’t read facial expressions, or sometimes didn’t really care how other people were feeling. To me, that was their business. Mum and Dad didn’t explicitly tell me I had autism at first. They explained that much like some people needed glasses to see or crutches to walk, I needed support to help me cope better. I had lots of one-on-one therapies to help build skills like reading facial expressions, how to manage conversations and taking turns, as well as other therapies for better organisational skills and coping with sensory overload. These are things you can learn, and whereas they might never come completely naturally to me, I now have a much better understanding of the conventions.
“I attended OT and also the Lucena Clinic, which helped me better understand my own condition. As a child, I really disliked playing with other children for long periods of time. It was loud and noisy and confusing, so I tended to avoid it if possible. For a long time, I didn’t like laughing because I realised the girls in my class were laughing at me, and so I associated it with being embarrassed, hurt. But I learnt enough to get along.”
Secondary school was much better. Catherine sent Coleen to a mixed school with no uniform, which suited her. “Although Coleen’s interpersonal skills had improved, if she was stressed or tired, or just having a bad day, these back-up systems could fail her. Even on a good day, when she came out of school she would get into the car and say ‘Just drive’. There’d be no chat. She needed quiet time to recalibrate after all the sights, sounds, smells of the day.” Coleen remembers how difficult she found touch. “People banging into me in the corridor or touching my clothes or hair were very distressing for me. Someone sneezing beside me was difficult, the smell of sweat, the taste of a new food.”
Catherine recounts how Coleen’s anxiety peaked during this time. She worried about the planet, the effect humans were having on climate, that the G8 wouldn’t be a success. “All worries about the planet became her worries.”
Coleen says she became vegetarian during this time and admits her worries about these issues were all-pervasive. “It bothered me that I couldn’t solve all the earth’s problems.” However, she did find interests outside of school which helped to ease the strain of that focus. “I got really into Kung Fu, which was good for my strength and balance. I also liked Drama, funnily enough, which bolstered my self-confidence. Studying for the Leaving Cert was very stressful though. There was only one thing I wanted to do, English and History in Trinity, and I fretted a lot about what would happen if I didn’t get in. Luckily, I did and I love it. First Year, was the best year of my life. I’ve even learnt how to ‘hang out’. I enjoy starting conversations with random people. I actually enjoy hearing what other people have to say. I can always retreat to the library if it gets too much. If I go to a lecture and it’s stressing me out, I can put earphones in, record the class and listen to it later. I have more options here, and people accept me for who I am.”
Catherine says that college really suits Coleen. “So many people had said to me ‘wait until she gets to college. She’ll find her tribe.’ And she did. It finally happened. She really blossomed. She has a boyfriend. She is more organised and less anxious. She has become a happier, more confident and outgoing person and we are very proud of her.”
Coleen’s final words: “I don’t focus on my diagnosis. It was useful when I was at school for getting supports but now I have accepted it and moved on. I don’t let it define me.”
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