Dear parents of autistic children, from an autistic adult

Dear parents of autistic children, from an autistic adult

I often get approached by parents of autistic children to help them understand their child’s behaviour. Any parent that asks me this or are reading articles like this have my respect. It won’t be easy, but you are clearly trying. I have tried to compile some of the most important pieces of advice I tend to pass on.

Disclaimer: The below is based on my own experience as an autistic adult as well as having a big input in raising my autistic brother, who is currently 8. Autism is a spectrum. Clearly not all these points will be applicable to your child. Hopefully some are and the rest at least help to guide.

 

My advice to parents of autistic children

1.    You are on their team
The most important thing you can ensure your child knows is that you are on their team. Always. No matter what battles they face at school, what challenges the world throws at them, they have parents who are firmly on their side.
As they get older you won’t be able to fight the battles for them, but you can stand with them, fight with them. Trust me, it will mean more than you know.
Song: Fall on me by Andrea Bocelli

2.   Meltdowns
Meltdowns are a big one when raising autistic kids huh? They are tricky to manage. I think the most important thing to remember is (assuming you are not autistic yourself) you have no clue what it feels like. They are trapped in torment; caught in a storm of emotion that they cannot control.
The first port of call should be to ensure their physical safety. If they are not in physical danger – Do not touch them. Unless you specifically know your child would want this. I know your parental instinct wants to wrap them up and tell them they are safe; this will not help them. If you try to and they lash out, that is on you.
First ensure physical safety. Second remove the trigger that caused it. Ideally let them escape from the situation to safety. From a certain food to a person, whatever triggered it, remove it. Help them to regain composure, give them time and space to regain control of their mind.
Song
: A little too much by Shawn Mendes

3.   Solutions to challenges
The typical solutions to problems will not work for autistic children. Forget the norm. Identify the desired outcome for you and the child, identify the barriers to that outcome. Find a path between the two.
Example:
Problem - As Jenson gets older his use of the main TV in the lounge for gaming has become an issue, as he stays up later.
Challenges - He is terrified to be upstairs alone. I broke this down with him and it centered around a fear that once he can’t see his parents, they may no longer be downstairs.
Solution – We are going to trial baby monitors from his room to the lounge. His parents will have the camera and he will have the monitor in his room. He will be able to talk to them and see them.
Jenson is very excited at this. He didn’t want to be downstairs, but he had genuine fears he could not overcome.
Forget the norm. Forget what baby monitors are really for and how an 8-year-old should really be in their own room by themselves. Work with your child, the situation and challenges you have. 9 times out of 10 there is a solution.
Song: I won’t give up by Jason Mraz

4.   See them
The world is going to judge your child harshly. The world sees me as ignorant and rude, selfish and abrupt. My closest friends and family are the ones who see the real me, beyond the fake show I put on for the rest of the world, beyond how I just scrape through social events.
Take the time to see your child for who they really are. If you do this you will see them in the situation, beyond the lashing out, beyond the ‘behavioural problems’. See their distress, understand what makes them tick. Open a dialogue at a young age and let them trust you to be who they really are with you. Special interests, fears, anxieties and everything that entails.
Song
: This is me by The Greatest Showman

 5.   Let them know they are perfect to you
As they get older, they are going to start realising they are not like everybody else. At 8 Jenson is aware he isn’t like the other kids. As cheesy as it sounds, they will need to know that they are perfect to you. There is nothing more brutal than a child feeling they have let their parents down. Regardless of what the world thinks, let them know they are and always will be perfect to you.
Song:
As you are by Daughtry

6.   Expectations
Your child will constantly be measured against societies expectations of how we should be. Don’t add your own expectations to that. I have had many conversations with parents that have realised they are placing their own ideas of happiness onto their child. We often do not seek the same things you do, from friends, to social activities and even down to types of careers. Forget what would make you happy and just make sure your child is happy. If they are happy gaming in their room talking to people online, then what’s the problem? (obviously ensuring it is age appropriate and internet safety).

Equally – for yourselves.
Society will judge how they expect parenting to be done. Honestly? Screw them. You know what works with your child. I know my mum has struggled greatly with this. The child is more important than ignorant onlookers. You will need to toughen up to judgement, parental instincts are strong, let them beat down any fear of judgement. You know what is best for your child, they do not. They do not have all the facts, nor do they have any right to them. Screw them.
Song: They Don’t Need To Understand by Andy Black

7.    Sensory battles
Sensory battles are probably the biggest challenge that you can directly help your child fight against. Learn your child and their triggers, learn what helps them.
The objective is generally to put as many barriers between the trigger and them as possible.
Examples:
Noise – Headphones are your best friend. If noise is a trigger for your child then try to always have headphones. Failing that they may attempt to use their own hands, often small children will do this ineffectively (leave gaps), so put your hands over the top of theirs to properly shield from the noise.
Crowds – Skin contact with someone they are comfortable with is a great soother. As is putting your body physically around them. With Jenson in crowds I stand behind him, hold both of his hands and then wrap my arms across his chest. Essentially creating a complete barrier between him and the crowds.
The better you get at reading your child and seeing what is causing the distress you will pick up ways to either remove it or lower its effect. Obviously at the point they have reached overload the only reaction should be to remove them as soon as possible, before they try to, potentially in an unsafe manner.
Song: Flash Light by Jessie J

Headphones are little mans best friend.

Headphones are little mans best friend.

8.   Special interests.
Special interests are not just hobbies or obsessions. They bring us intense joy. The long-term ones become an integral part of who we are. There are no words for what Harry Potter means to me, it goes far beyond just ‘liking’ it. Please don’t mock your child about their special interests, no matter how bizarre they seem to you, it genuinely hurts us and it will make us upset.
Often parents find it hard to ‘reach’ an autistic child or to find common ground. Special interests are the answer. Use them to engage and connect with your child. If my friends or family ever engage in Harry, it immediately makes my day. It really is a very hard connection to explain but it can be used to bring great joy for your child. Given everything stacked against them, let them have this sense of joy.
Song: Iris by Ronan Keating

9.    Discipline
Disciplining an autistic child is tough, it relies on you being able to read them. You will get better at this, but it takes real effort. Autistic children, more than most, rely on a structured approach to discipline, they need to learn manners etc as much as any other child. Supporting and understanding their disability is not about giving free passes, it’s about knowing when they need support and when they are being a typical child and pushing their luck. They will still do both! You will get this distinction wrong sometimes, that’s okay.
Song: Better than I know myself by Adam Lambert

10.   Mental health
Statistically speaking most of you will raise children who will fight mental health battles as they get older. This is in no way a reflection on your parenting, please don’t take it as such. It is the effect of a world that doesn’t make sense to them, and often treats them poorly. Find them in the darkness and give them hope. Be the reason they have the strength to keep fighting. It will be hard, supporting someone through depression, anxiety etc, is tough. Find the strength, they will need you.
SongDemons by Sam Tsui

11.   School
If your child is at school, this is their biggest challenge. You are probably fighting the school system and trying your best to remove the challenges as much as possible, but it will still be incredibly tough for them. They will go to school every day and fight through it. When they get home, they are likely pent up, agitated and hard to communicate with. They will need to wind down and accustom to being home in a safe environment. Allow them this adjustment period. Help them to regain composure and feel settled.
Example:
Jenson will walk in the door and shred bags, shoes, coat, on his way to the sofa to watch his YouTube videos with his headphones. This is not the time to parent him on picking up behind himself.
Either we pick it up for him or wait a while and later ask him if he could please pick those bits up. If we asked him immediately, he would explode. If we wait and ask him, he will happily do as asked. This is a very clear reflection of it not being about laziness or behaviour.
When they come home, go careful to not make them feel they are still being ‘attacked’. Allow them to let their guards down. By doing this we have no explosion and Jenson is his beautiful self within the hour.
Song: Invisible by Hunter Hayes

12.   2nd Hand
This is the most controversial point I’m going to make. And know that I know raising an autistic child is difficult, I know it puts intense pressure on families, especially on marriages and relationships. I know you get judged when you are outside the home, I know you must consider things many other parents would not need to. I know it’s hard. I have all the respect for you guys trying to do the best by your child, wanting to understand.
But please know. You are dealing with the 2nd hand effects of autism. Your child is living them 1st hand. 24/7. Please don’t ever forget that your child is the one who has this for life, you are never more effected than they are.
Song: Take me home by Jess Glynne

13.   Self – Care
Balance is crucial. You will need respite from your child. Looking after an autistic child is draining, self-care is important. Running yourself into the ground will do your family no favours. Self-care is not just important for you, but for your child and the rest of your family (other children, spouse etc)– they will need your strength. Make sure you take time for yourself, to be who you are, away from the care needs of your child.
Song: Strong by Sonna Rele

Summary

Things are likely to get incredibly tough for your child at times. You will be one of their biggest strengths to keep fighting. The first time I truly tried to be independent, University, I crashed and burned, badly. I needed medication, therapy and my amazing friends and family to get me through. But I did get through it. My mental health is stable, and I do what I love every day, I’m happy.

The song that got me through university: One Life by Boyce Avenue

Bonus points for anyone that’s realised music is my other special interest. If you do have time to listen to some of the songs, they really do add meaning and emotion to the point I’m explaining. I tie songs to every memory, situation, thought process I have. These are the ones for these.

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