It’s World Autism Awareness Week and we’ve been in touch with leading UK charity The National Autistic Society (NAS) to gain an insight into the condition and to ask for information on how parents can spot the signs early, and tips for dealing with the behaviour often associated with autism. We also share one parent’s moving account of the diagnosis of her two toddlers. 

What is autism?

Autism is a lifelong developmental disability that affects how people perceive the world and the ways in which they interact with others.

Autism is not an illness or disease and cannot be ‘cured’. Often people feel being autistic is a fundamental aspect of their identity. Autistic people see, hear and feel the world differently to other people. It’s a spectrum condition. Autistic people share certain difficulties, but autism can affect people in different ways.

Autistic people can get overloaded by everything around them; as though all their senses are firing at once, like there’s no filter, or they’re getting too much information. As you can imagine, this makes the world a terrifying, isolating place.

Some autistic people also have mental health issues, learning disabilities or other conditions, that require different levels of support. All people on the autism spectrum learn and develop, and with the correct support, they can live a more fulfilling life.

Here are some of the main signs a child may have an Autism Spectrum Disorder (ASD):

  • A child does not draw their parents’ (or others’) attention to objects or events. For example – pointing at a toy or a book; or drawing attention to something that is happening nearby (or a child may eventually do this, but later than expected).
  • A child carries out activities in a repetitive fashion. For example – repeatedly lining toys up in a particular order, or always playing the same game in the same way,
  • A child may elicit resistance to change or doing things differently
  • A child has emerging difficulties with social interaction, social communication and social imagination. These are the three main areas of difficulty experienced by all people with an ASD and are sometimes called the ‘triad of impairments’.
  • Displays behaviour such as pinching, kicking, biting pica (putting inedidble items in the mouth), or self-injurious behaviour.

Small changes by others can help reduce the overload, remember that a change as simple as using clear language, being patient, and avoid making last-minute changes can really help.

It’s important to understand autism, the person, and the change you can make. Here are some examples of typical behaviour and what you can do to help:

What are meltdowns?

  • A meltdown is when an autistic person gets overwhelmed by everything around them, and may begin to shout, scream, cry or lose control.

What can I do?

  • Spare them a moment. Try not to judge. Be patient. Calmly ask if they’re OK. Give them some time and space to recover. That really is all it takes to help.

Unexpected changes

  • The world can be an unpredictable, confusing place for autistic people, and that makes a daily routine crucial. When something unexpected happens, it can feel like the whole world is spinning out of control.

What can I do?

  • A little notice and understanding can make a huge difference. Give them some warning. An autistic person is better placed to deal with unexpected changes if they’re made aware of them. When plans change, let them know in advance.

Social anxiety

  • Trying to understand what others mean and how to behave can be exhausting and stressful for autistic people, and can lead to feeling excluded and isolated.

What can I do?

  • Take an interest. Invite them to join in as much as they feel they want to. Offer support if they’re struggling.

Processing time

  • Sometimes autistic people feel like they’re getting ‘too much information’. They need a few moments to filter through it all. This is called processing time.

What can I do?

  • Take your time. Ask one question as simply as you can, and just wait. If you still don’t get a response, try rephrasing it or writing it down instead.

Sensory overload

  • Autistic people can be sensitive to lights, sounds, smells and sights, which can lead to an overload and a meltdown.

What can I do?

  • Make space. Little things can add up to an overload of sensory information. Try to avoid talking over each other, turn down music, offer to dim glaring lights.

Case study

Donna Street is a mother of two young children with autism.

“My son Cody is four. His change from “normal” to “autistic” was traumatic for everyone. He had been progressing well, walking, talking to a point, would bring you books to read with him. Then one day, not long after his second birthday he woke up incapable of these things. All his words were lost, he would scream if you touched him, become distressed and hysterical if anyone entered the house and wouldn’t interact with anyone.

There were of course little signs that we have since realised were pointers to Cody having autism. He wasn’t a big smiler, in fact we used to (affectionately) call him the Grumpus! Play would often be highly repetitious and when he discovered cars and trains, inevitably the lining up of toys would start. Small at first, the kind of thing you’d go “ooo look what he’s done, how clever!” Now of course you can’t walk through the house without the risk of trampling through a half a mile long line of Thomas the Tank Engines! He would walk on tiptoes from the moment he could stand and has never stopped this, his calves are like a shot putters!

We took it seriously, immediately seeking medical advice and starting endless rounds of assessments, classes, therapy, and stranger after stranger coming through our front door to stare at Cody, and it felt, at us too. We interrogated ourselves often. Could you have done something different? Did we do something to make this happen? Could we have stimulated him more?  Was I a bad parent? It’s hard enough to deal with the distress of seeing your son go through these changes but to question your own involvement was heartbreaking.

Cody was diagnosed with autism at a children’s development centre after an eight week assessment period, close to his third birthday. We finally had the confirmation that would get us the help we needed. We had no idea what was coming of course! No idea what living with autism meant. No idea that this would give our second child, Jesse-Leigh a 50% chance of having autism too. She has severe autism with learning difficulties. There are startling differences between Cody and Jesse. Cody progressed though was a very shy individual, his regression was dramatic and traumatic but there has been no regression with Jesse, as she never progressed in the first place. She beamed from the day she flew into this world and hasn’t stopped since. She goes to ANYONE!

Receiving a diagnosis creates many feelings. You are shocked and scared. Terrified of what that diagnosis means. We didn’t really know what it meant at the time, and even if we had, nothing can prepare you for what life will be like. The best way to learn what autism means is to live with it.

From this we move into sadness. Deep, deep sadness. They won’t have a ‘normal life’, they won’t have a relationship or a job, they may never get married or have children, they may never leave home…You mourn the loss of how you thought your life would be. Grief. It’s a massive part of the process. You grieve for the children you envisaged when you carried them for nine months, and then you hate yourself for not appreciating the children you have now. That will come in time but at that moment it’s difficult to see passed what you and your children have lost.

Anger is a huge part of the acceptance process. Why us? Why them? What did we do to deserve this?

We moved from this to confusion and a thirst for knowledge. It’s at this point I started to crave information. As much information as I could get. I really started to throw myself into life as a parent of kids with autism. Now I am a bottomless pit of facts, websites, charities, funding sites, legal support, parental advice groups, special schools up and down the country…I have to know everything if my children are to get the absolute most out of their lives.

And after this comes acceptance. My husband and I decided this was our life now.  As it would be the children’s lives. They will have fun and adventures, discoveries and achievements. They will smile and laugh and be happy and that after all is all anyone wants for their children. My children will always be a credit to me; they will astound me every day simply by being who they are.”

As Donna’s moving account describes, suspecting your child has autism, and a subsequent diagnosis can be difficult to handle. There can be a lot of uncertainty and emotions to deal with. But help is on hand, you needn’t feel alone.”

The NAS has lots of information available on diagnosis and support. If you think your child may have an ASD and you want to get a diagnosis, the first person to approach is your GP, or in the case of young children you can also approach your health visitor.

It can help to write some notes or keep a diary for a few weeks on your child’s behaviour to help you describe the difficulties. Once your GP or health visitor is convinced of your child’s difficulties, your child should be referred for a formal assessment. As Donna mentioned, receiving a diagnosis meant she and her family could access the support they needed.

Information provided by The National Autistic Society website.

Telephone: 0808 800 4104, Monday-Thursday 10am – 4pm and Friday 9am – 3pm.