When a child you know is autistic, it’s easy to forget that this affects the lives of their family as much as it does the child themselves. Whatever the disorder, if a child is experiencing extra challenges in their life, it means that their parents and loved ones are, too. However, family members can often be overlooked and forgotten, even if they’ve had to adapt and make sacrifices to support their child with autism.
In the Post
What is Autism?
Autism (also known as autism spectrum disorder, ASD) is a fairly common disorder, affecting roughly 1 in every 60 children. The disorder is far more common in boys than girls, and is more likely to occur in children born to older parents. Signs of the disorder are noticeable from a young age and autistic children can be diagnosed from as early as two-years-old, though most are diagnosed when they’re closer to four.
In young children, common signs of autism include lack of eye contact or smiling, repetitive movements, talking less than other children and repeating themselves more when they do talk, and getting extremely upset over minor issues.
In older children, signs include a lack of empathy or misunderstanding of how others feel, liking a strict routine, seeming obsessed over their hobbies and finding it hard to make friends.
Generally, autistic girls are harder to identify as they’re better at masking these identifying factors and often just come across as shy or quiet.
Beyond the Child
Having a child with autism is a challenge, even if you respond to it in a positive way and try to make the best of a situation you didn’t plan for.
Parents of autistic kids can find themselves getting stressed, depressed and easily run down, not only by the challenges of their child, but by extra pressures that come with the diagnosis. There are numerous stress factors involved that those outside the situation mightn’t be able to appreciate.
These parents might have had to reduce or give up their careers to support their child, which could easily contribute to financial worries.
While many people will be helpful and understanding of their personal strains, there will be those who make unhelpful contributions or are even unkind, perhaps unintentionally but sometimes as a form of bullying.
Having a child with autism can cause parents extra stress and worry which may impact on their own health, and they may have to fight for the services and support that their child is entitled to.
Knowing these challenges is the first step in supporting parents of autistic children.
Stress that is Particular to Parents of Autistic Children
Parents of children with any sort of chronic illness or diagnosis will suffer from stress, but studies have shown that parents of autistic children have some of the highest levels of stress. The biggest contributing factor to this is that autism poses mainly social problems, which can be harder to deal with.
Parents, who inherently want to show their love for their child with physical and social contact (such as hugs, kisses, eye contact, smiling, meaningful conversations) can find it bewildering when their child doesn’t want to participate in these exchanges.
A parent can easily feel unloved or rejected by a child who is unable to show them love in this way. As such, this is a major contributing factor to the specific stress felt by parents of autistic children.
It can also be stressful if there are other children involved. Siblings want to play with their autistic sibling in the way they do with other children – physical contact and social aspects are a huge part of this, and they can feel stumped if feelings aren’t reciprocated.
Parents can also find it tricky to treat their children equally if they show and receive love in different ways. Understanding these challenges that families with an autistic child face can help you to support the parents in a more empathetic way.
Social Responsiveness Scale
Children with autism find communication difficult, so it mightn’t be a surprise to find that their parents often do as well.
The Social Responsiveness Scale (SRS) measures autistic traits that are commonly found in those with autism. It was found that when both parents scored highly on the SRS, it significantly raised the chances of them having a child with autism.
Also, if the father scored highly, it raised the chances, but if only the mother scored highly on the SRS, no increase was seen. While based on limited research, it’s interesting to note that the traits you notice in an autistic child might also be perceptible in their parents.
Whether you know the parents of an autistic child through work, family, friends or as a neighbor, it’s important to have an understanding of what they’re going through and how you can best support them. It doesn’t take much to be a positive influence in their lives and help to reduce the stress they feel in their situation. Read on to discover ways in which you can help.
- Please think before you speak. Words can hurt, even if they’re well intentioned. Parents of autistic children will, all too often, hear phrases like “What’s wrong with your child?” or “That child isn’t normal”.If there are basic things you want to know, do research yourself rather than asking blunt, hurtful questions. If you say something that offends, just apologize and explain that it can be hard to know what to say.
- Please think before you react. Children with autism can act in strange ways that, if you’re not used to it, can seem odd or even horrifying.Many people find it quite frightening when autistic children are stimming (often, a repetitive physical movement like tapping or flapping their hands) but this is just their coping method. Don’t be embarrassed, either – just accept that this is their reality.
- Please don’t give too much advice. Advice is very easy to give, but much harder to take, particularly if it hasn’t been asked for or is coming from someone who doesn’t know what they’re talking about.Don’t be quick to advise the parent unless they ask you to. They might already know what it is you’re suggesting and find your words patronizing.
- Please don’t judge. Parents of children with autism can experience stress that you’ll never be able to understand. If they say or do things that you find incomprehensible, it’s not your place to judge them.All parents, in moments of stress and despair, can say things that they don’t mean (such as “I could strangle him, sometimes!”) and autistic parents are no different. Be understanding and support them more than ever in times of need, rather than admonishing.
- Encourage the parent to join groups and clubs. Parents of autistic children can find support groups very helpful, but might be nervous about going along to them.If you know of a local support group, offer to attend the first meeting with your friend so that they don’t feel anxious, or offer to babysit their child so they can attend the meeting without worrying. Helping your friend to find the right support will be invaluable.
- Encourage the parent in non-autism pursuits. If you have a child with special needs or extra challenges, you can find yourself living in a ‘special needs bubble’ and cut off from the rest of the world. What with attending a special school, meeting parents with similar issues and joining support groups, autistic parents can feel like they don’t get to do anything ‘normal’.Invite your friend to social clubs and events that have nothing to do with autism and encourage them that, sometimes, they need to do things just for themselves. If they need a babysitter, offer to watch their child to give your friend a chance to attend these groups and have some ‘me time’.
- Be a friend that says ‘they can’. Parents of autistic children will be used to hearing the word ‘can’t’. They’ll be sick to the back teeth of what their child apparently can’t If your friend has a belief in their child, if they know in their heart that it’s something they can do, support them.Parents are passionate about encouraging the best life possible for their children – don’t tell an autistic parent that they’re deluded or wasting their time. Sometimes hope is the most important thing.
- Help them secure support services. Parents of autistic children might be eligible for funding, grants or other support services that will help them deal with the challenge of having an autistic child.They might be able to apply for respite grants to buy them some time to themselves, and educational services might also be able to offer them help. Support the parent in finding out information and pursuing it so that they get all they’re entitled to.
- Let them know that they’re not alone. Encourage them to check out vlogs like Fathering Autism to see real life examples of people who are living the same experiences that they are.
Whatelse we can do
- Sleep solutions. Is the parent a close friend who can really rely on you? Sleep deprivation is a big problem with parents who have young autistic children. It can affect their mental, physical and emotional wellbeing adversely.Offering to stay the night (and be the one to wake up and support the child) will buy the parents an invaluable night of unbroken sleep. Even if the parents feel they can’t take you up on the offer, they’ll be so appreciative of the gesture.
- Do some research. There’s plenty of literature out there for you to inform yourself better on what autism is and how you can help. Books like Sharon King’s How to Best Help an Autism Mom will be an invaluable tool to you in fostering an empathetic relationship with your friend.
Family, Friends and Social Events
- Be honest with your own children. If your children are friends with the autistic child, be honest with them and don’t hide the fact of the diagnosis. When children don’t understand something, they can be unkind without meaning to.However, children also have a huge capacity for kindness and inclusion, and if they know how to handle an autistic playmate (for example, by not trying to hug them or engage them in physical games, but to still include them and make them feel welcome) then your children will grow up with an understanding of empathy.
- Be understanding about social events. Don’t get frustrated if your friend always responds ‘no’ to family events such as birthdays or BBQ’s – instead, consider what it is you’re asking of them and the challenges that might pose.It might seem like inviting them to your summer BBQ is a nice, inclusive thing to do, but if their autistic child is likely to scream and cry at the busy event, they probably won’t want to come. If you invite your friend to a holiday disco, remember that their child might find it challenging to be in noisy situations.If you’re unsure whether an event is going to be suitable or not, ask your friend before you make plans. If there’s something to celebrate, you could always invite them over at a different time for a private party rather than forcing them into a busy and stressful environment.
Debunk the Myths
Parents of children with autism will face challenges every day, and might even feel like they need to explain themselves to strangers who want to air their opinions. Some parents face these challenges head on and, over time, develop stock answers to give people that ask unhelpful or hurtful questions.
Some parents find this aspect of being an autism parent very challenging and can find it upsetting when strangers approach them. As their friend, you should get clued up on the things people are likely to say and how you can respond.
- When people ask about a cure for autism: There isn’t one. End of. Autism isn’t a disease that needs to cure or a problem that needs to be fixed, it’s a lifelong disability but those affected are still able to live well. Medication and professional support can help autistic people to live better, but there isn’t a cure for it.Children with autism can grow up to lead happy, fulfilling, meaningful lives – they just do things in a different way. Don’t be afraid to respond boldly to people who think there’s something wrong or abnormal about having autism.
- When people make presumptions about an autistic person’s abilities: Autism is a spectrum and those living with the disability have different traits.Some people might be ‘mildly autistic’ and you mightn’t even be able to tell they have it – this is particularly common in women and girls who learn to hide their autistic traits much better than boys do.
- When people think a ‘meltdown’ is just an autistic person getting angry: Meltdowns often occur when autistic people experience sensory overloads. Things like loud noises or strong smells that wouldn’t bother a person without autism can be frightening to someone who has the disorder.They can find the experience overwhelming and stressful, causing them to ‘meltdown’. This doesn’t mean that they’re angry or aggressive, just that this is how they cope with the situation.
- When people think an autistic child is just being naughty: It’s easy to be judgmental and if you see a child who is screaming or lashing out at their parents, you might presume they’ve been badly raised or have behavioral issues.Parents of autistic children might experience strangers telling them to ‘control’ their child better, because they don’t understand that these ‘naughty’ behaviors are the way that the child reacts to situations that can’t deal with. Try to support your friend by promoting a calm environment or going somewhere else if a setting becomes stressful.
Autism affects people differently, and the parents of an autistic child you are supporting will need different help depending on where their child is on the autistic spectrum.
Level 1 or High-Functioning Autism, or Asperger’s is when a child can appear to be no different to other children their age. They might seem a bit quiet or shy, but the traits of a high-functioning autistic person are so slight that they are still able to function like other ‘normal’ children – at least on the surface.
They will be able to communicate with others but might seem a little odd in conversation, like they don’t completely understand the exchange. People with this level of autism are usually able to attend a mainstream school and can hold down a full-time job in adulthood, and live independently.
Even those in the level 1 category will need support with things like satisfactory social interactions and they may struggle later in life if they don’t receive help from an early age.
Level 2 Autism is noticeable both to strangers and those who know the child well. They’ll display the usual traits of autism such as difficulties in communicating and finding social situations tricky. They will be likely to be poor at making eye contact, engaging in physical contact or understanding the feelings of others.
Children with this level of autism might need to go to a special school, but equally might be placeable in a mainstream school with the right support. In later life, they’re likely to struggle with a full-time job and independent living.
However, there is much support available these days that make day-to-day living much more manageable for those with level 2 autism, and the parents of these children should be given every hope for the future. These children will need significant professional support to help them lead ordinary lives.
Level 3 or Severe Autism can be the hardest form to deal with, particularly for the parents. A child with severe autism will find communication extremely difficult and might be non-verbal. They might be unable to adapt to planned or unexpected changes in their lives and will struggle to break out of accepted routines.
Children with level 3 autism will likely need 24/7 supervision, and many will require support for their entire lives, either from family members or professional caregivers. While those with milder autism often have high or normal IQ scores, those with severe autism usually have lower than average IQ scores.
However, even if someone is non-verbal or can’t write, it doesn’t mean they can’t communicate. Many people with severe autism learn to use spelling boards or picture charts to communicate with others. Severe autism can sometimes (but not often) lead to the person being aggressive, potentially injuring others or themselves. Those with severe autism might require medication for other associated illnesses or disorders.
Understanding autism better is the first step in supporting a parent who has an autistic child. It can be daunting to remain close to friends who have become autistic parents – many parents with autistic children find that they lose friends over the years.
Sometimes this happens because people feel awkward and don’t know what to say or how to support them, and find it’s easier to avoid them.
Others might stop being friends when the parent realizes that they don’t understand or respect their challenges, particularly if they’re rude or judgmental.
Remind your friends that autism isn’t necessarily a barrier to success, even fame and fortune. There are numerous iconic people who are autistic:
A savant is someone who has significant disabilities and yet excels in a certain field to an above average degree, even to the level of genius. Another autistic savant you might have heard of is Tim Peek, who was the inspiration for Rain Man. These cases prove that even with severe disabilities, greatness can be attained.
The best thing you can do as a supporter is to just try and be there. Try to be understanding. Be forgiving if your friend has to cancel on you frequently and understand that they’re facing extra challenges on top of the usual difficulties that come with parenthood.
Try to be a good listener and remember to call your friend up and see how things are going, even if you aren’t able to see them quite as often. In life, a little kindness can go a long way.