Having a child where you feel they may be autistic can involve many ups and downs. Autistic children have this wonderful personality with an ability to think differently to the rest of the world. They also have this loving smile and laugh that will make you the proudest parent.
Whilst parents will say that their biggest accomplishment was raising their child/children, there are also struggles involved with autism. These are major struggles that both the child and parent face on a day-to-day basis.
When our son was approximately two and a half years old, we noticed that he wasn’t meeting the developmental milestones outlined within the red book or what society classes as the norm. This involved speech and fine motor skills. I had also seen a shift in his behaviour in comparison to when he was approximately 18 months old. Some words acquired, he didn’t say again and behaviour was becoming more challenging, especially in social situations such as toddler groups and busy play parks.
As much as I loved my son, I had always found it really difficult with him. It all began when he was a baby where he would cry for hours. When this sort of settled down at approximately 3 months due to us finding out food allergies were an issue, he would have these outbursts where we struggled to calm him down and never knew the reason for it. He is an early riser and since 6 months old would wake very early every morning. There were days when he would go through to the evening without a daytime nap. We would be asking ourselves how we are ever going to get through the day.
At about 2 and a half years old, he would also have meltdowns especially when he was ill. It was a shock to see our son hitting his head against a wall or a floor and it would feel completely out of our control. He seemed susceptible to many illnesses and we had to make the decision to remove him from pre-school after just 3 months attending as he was just ill for the whole 3 months catching one thing after the other. This was having a big impact on his behaviour and meltdowns.
Changes would be big problem. A holiday in a different environment, new baby cousin or his local play area closing. They all caused hours of tantrums and sometimes meltdowns too.
At one point, I was really struggling and my mum mentioned Autism to me. Initially I panicked as it was something I knew nothing about. I would then spend hours researching and realised myself that she could be right.
Probably the one thing everyone will do in the beginning is turn to Google! Searching ‘autism symptoms’ may help you understand certain behaviours but what is the exact diagnostic criteria?
There are two main sources for official autism diagnoses used by healthcare professionals:
DSM is mainly used within the US and ICD is used within Europe.
In the past, DSM and ICD have defined autism but have altered their criteria multiple times. You could say that they didn’t really understand the disorder themselves and have had to evolve. But that also leads onto the question ‘do they fully understand autism now?’ I highly doubt it.
Currently ICD-10 Version 2019 places autism under ‘Pervasive developmental disorders’. One subcategory is ‘childhood autism’ and says the following:
Childhood autism – A type of pervasive developmental disorder that is defined by:
(a) the presence of abnormal or impaired development that is manifest before the age of three years
(b) the characteristic type of abnormal functioning in all the three areas of psychopathology: reciprocal social interaction, communication, and restricted, stereotyped, repetitive behaviour.
In addition to these specific diagnostic features, a range of other nonspecific problems are common, such as phobias, sleeping and eating disturbances, temper tantrums, and (self-directed) aggression.
If someone was to read the ICD-10, it could put them into a panic. Whilst some of the points made can be relatable, the definitions only focus on the challenging behaviours or some parts of the child’s personality. The points are not all true for every child with autism and there is no mention of the positive parts to autism or why a child may be autistic.
If you want to know the signs of autism, Autism Speaks provides good examples of the child’s behaviour and characteristics.
Whilst there is a long way to go with society understanding autism, things have improved since the disorder was first discovered. Here is a brief history in order to understand the public misconceptions on autism.
In the late 1970s Susan Folstein and Michael Rutter carried out a study on twins which found that when one member of an identical twin pair had autism, the second twin was more likely to have some form of autism than when the twins were non-identical. This research showed that there is strong evidence that autism has a genetic basis.
In the past, people have tried to find a cure for Autism. For example, Autism Speaks was founded on the goal of curing autism as one of its objectives, however ‘cure’ was dropped from their mission statement in 2015.
There is no ‘cure’ for autism and many people wouldn’t want there to be. For some who have been successful in subjects such as science and the arts, they would have needed autistic traits in order accomplish what they have. Famous people believed to of had autistic traits include Albert Einstein, Isaac Newton, Charles Darwin and Steve Jobs.
Autism can make you think differently to the rest of the world. You may like attention to detail or be good at thinking logically. Whilst these are all great qualities and ones that can make others envy, there are also struggles that can come with autism too.
Autistic children may find certain tasks harder to complete than what others do. For example, carrying out the actions in order to ride a bike. This can be a sign of motor planning difficulties.
Another thing motor planning difficulties can effect is speech. Speech requires motor planning for the mouth, tongue and voice box.
Here are some other examples of motor planning difficulties:
Early interventions are key in order to help with these difficulties.
We have covered the behaviours professionals have recognised with autistic children but how exactly do autistic children feel and perceive the world.
Each autistic child is different but they all have sensory preferences. Recognising the child’s sensory preferences can make it easier for you to understand your child’s behaviour.
It will show you where to begin in helping your child communicate. When your child receives information through their preferred sense, they may be able to pay attention for longer and learn more.
Autistic children can experience both hypersensitivity (over-sensitive) and hyposensitivity (under-sensitive) to a wide range of stimuli. Most children have a combination of both.
If your child is over-sensitive to movement, touch, sight, sound and smell, it can be overwhelming for them. This can result in sensory avoidance. Therefore, your child will try to get away from stimuli.
If your child is under-sensitive to movement, touch, sight, sound and smell, they may be constantly looking for more sensory input from the environment.
Most autistic children have a combination of both.
Your child may try to avoid movement and therefore could be afraid of escalators.
Others may seek out movement by running around the house.
Your child may be over-sensitive to the light in their eyes.
Others may like to watch their fingers move quickly back and forth.
Sounds can seem very loud to some children. You may put the hoover on or a loud car go past and it is clear that this is a shock to them.
At the same time, your child may not hear their name being called.
Sometimes or quite often, children may experience sensory overload. You may see issues building up to this such as increased movement or stimming, covering ears or eyes, difficulty recognising hunger or tiredness, frequently touching others or pulling you all over the place but not really communicating what they require.
This sometimes leads to:
Sensory overload can cause a child anxiety, a need to escape or difficulty communicating. When the brain’s resources are being used up by sensory processing, it can stop other functions such as speech, decision making and information processing.
Whilst children with autism can find tasks harder than others, I think it is also important to mention the parents or caregivers. Having an autistic child full-time without support can have negative impacts on your health, relationships and even finances.
If you have family, a partner or friend who wants to support you in raising an autistic child it is important for everyone to be on the same page.
Others need to understand the characteristics of autism themselves. For example, life with an autistic child generally means that anything you use to do spontaneously must be adapted and planned. Constant communication is key and it can all still go wrong at times.
Taking your child to a fancy new restaurant could be a mistake if the meals are not something bland and what the child is use to.
There will be countless times where you think ‘shall we just stay in today?’ because some days everything can feel like hard work especially with no sleep or if your child is poorly and struggling self-regulate.
There will be times when a close family member will make an effort and it will not be reciprocated. The child may cry and drop their whole body to the floor! Family members must not get offended by the child even if it does hurt their feelings. It can just feel like you are constantly walking on egg shells with your child some days. All you can do is keep trying and it will get better after about the 150th time (easier said than done – I know).
If you suspect your child is autistic, the way you parent your child may differ to other parents. Sometimes as a couple, one partner can disagree with the other on parenting. One parent may come home from work and just see their child as being selfish and spoilt. Whilst all children can act this way, autistic children can take this behaviour to a whole new level. These problems however are normally caused by the child being ill, tired, hungry, upset or overwhelmed. Most autistic children are not able to communicate and let their caregivers know the problem exactly but to others, this looks like bad behaviour.
Partners can also become withdrawn from their relationships due to tiredness or feeling intense pressure or hatred from their child most of the time. Many autistic children can reject loving parents or family and not accept affection such as cuddles and support. This can rub off on whoever is with the child most of the time.
Whilst there is a lack of help from professionals with advice on bringing up an autistic child, there are plenty of websites and books that can help you both learn about your child’s behaviour and how to bring out the best in them. It is important for people involved with the child to do as much research as possible as a greater understanding will ensure everyone is working together. Here are a few helpful places:
If you feel your child may have autism, there are a number of ways to begin a referral process for them.
You could speak with the GP, Health Visitor (if child is under 5) or Special Educational Needs Coordinator (SENCO) at your child’s nursery, pre-school or school.
Your child would then need to have an autism assessment completed by an autism specialist. At the end of the assessment, you will be provided with a report which will detail whether or not your child is autistic.
It is important to bear in mind that waiting times for autism assessments can be very lengthy. In the mean time, it helps if parents can carry out research themselves in order to understand the disorder more.
We have covered the definition of autism which can sound daunting but let’s also remind ourselves what autism isn’t:
Your child may be living in a world with sensory overload where there is little understanding for them and awareness. However, it is important that they aren’t defined by what they can’t do but rather what they can.
