My Top 20 Tips for Parents of ASD Children … in no particular order ….
1. A diagnosis doesn’t change your child. Your child is still the same beautiful child you met the day they were born. A label does not change this.
2. “If you’ve met one child with autism, you’ve met ONE child with autism”. All our children are unique with their own personality traits, likes and dislikes. Autism doesn’t change this. It’s important for teachers and for parents to recognise that your child is unique and has their own individual strengths and challenges.
3. You are the “expert” on your child. Don’t be concerned with others opinions about how you choose to parent your child. Nobody is more qualified to make choices and decisions about your child than you. Your opinions and concerns are valid and should always be given utmost respect and consideration by anyone working and interacting with your child. Trust your instincts. Often our children aren’t able to articulate their thoughts and concerns like their peers can. If you think something is wrong, it probably is. When it comes to your child trust your paternal instincts about their capabilities and challenges.
4. Remember that behaviour is a form of communication for our kids. Look beyond the presenting problem (behaviour) to identify the true source of the problem (trigger).
5. Be informed. Learn as much as you can about Autism and any other co-morbid conditions your child may have. Read books and other literature, ask lots of questions of your specialists and therapists, join a local support group, participate in online forums and endeavour to connect with others who can help you remain knowledgeable and connected with ASD oriented happenings in your local area.
6. Work on your child’s strengths. So often we are focused on “fixing” or intervening in behaviours and challenges that we forget the huge value of your child’s strengths. Perhaps your child loves horses or music or technology. This could be a future career path for them. Nurture, encourage and value these strengths both at home and at school.
7. Self-care is extremely important. “Rest and self care are so important. When you take time to replenish your spirit, it allows you to serve others from the overflow. You cannot serve from an empty vessel”.
8. Try new things. Although our children can tend to love routine, structure and the familiar, don’t forget to provide opportunities for them to experience something new and exciting.
9. Breaks! Breaks! Breaks! Our children require regular breaks throughout the day whether at home or at school to ensure that their stress levels remain low. These breaks will help with overall engagement in learning and interactions throughout the day, and they are important whether you’re at school, at home, at a party or out shopping.
10. Look after your partner and your relationship. Make time for one another and consider some regular counselling for the two of you to help manage the stress and to keep you both connected.
11. Teachers – try to be sensitive to the stresses and needs of the parents. They have been walking this road for some time before encountering you and they will be doing it long after your role in their child’s life is over. You can make such a huge difference to the present simply by supporting, listening and by choosing to be a part of the solution, not a part of the problem. The key to success with ASD kids is building a solid rapport with them and a great way to do this is through their personal interests!
12. Create a community of care around your family and your child. Remember the saying – “it takes a village to raise a child”? This is so very true. Create a supportive community of therapists, teachers, friends and family who will support you and your child in the journey. Work together as an interconnected team for a common purpose – the happiness, well being and progress of the child.
13. Don’t get so wrapped up in intervention and therapy that you forget just to ‘be’. Many parents feel a need to be constantly actively intervening and providing therapy for their child. I think one therapy and one activity (such as swimming lessons) is enough in any one term. If you do more, you will simply burn out. Our children need time to play and enjoy being a child. They need time to just ‘be’ and so do you as a parent! Enjoy your children despite their challenges. Involve yourself in their interests and introduce them to your interests. Find activities you can do and enjoy as a family and always make time to connect and enjoy one another.
14. Spend time with others who understand your journey. Join an ASD support group and meet other families who can support you and provide you with mentoring when needed. It’s really lovely to spend time with people who truly ‘get’ your situation and where your children can play and interact without judgement.
15. Never be afraid to advocate for your child and be assertive when it comes to their needs. If they require reduced attendance at school due to anxiety and/or fatigue – request it! If you think school swimming lessons are too much due to anxiety and sensory issues – communicate that concern. If your child is having huge meltdowns at the end of every day – talk to the school; communicate your concerns and be a part of creating a plan to improve this. If you don’t think the prescribed course of therapy isn’t working for your child – voice your concerns. Advocate and communicate.
16. Always remember that bumps in the road are to be expected. We can’t learn if we don’t make mistakes and feel uncomfortable on occasion. When things get tough, remember that they will eventually get better. Just take things day by day, and try not to become overwhelmed when you hit those inevitable bumps in the road.
17. Asking for help is really hard but it is important for your own well being and that of your family, that you learn to ask when you need help. Many of us feel that asking for help is a sign of weakness or an admission that we are not coping. Accepting help from someone else is allowing that person the opportunity to share their gift with you. There are so many helpful things friends or family could do for you which would lighten your load eg grocery shopping; running errands (posting a letter, going to the Chemist, taking a pet to the vet;) taking non-ASD children out for a fun day; listening; minding non-ASD children for an hour whilst you attend therapy; doing your washing or ironing; preparing a meal. “Ask for help, not because you are weak but because you need and want to remain strong!” (Les Brown)
18. Remember that autism is a reason, not an excuse. Our children require parameters, boundaries and limits perhaps more than their typical peers do. Don’t be tempted to make excuses for poor behaviour/choices and encourage your child’s support team not to do this either. All children tend to try and often succeed in meeting our expectations – so let’s ensure our expectations of them are appropriate. “There is no passion to be found in settling for a life that is less than the one you are capable of living” (Nelson Mandela).
19. Disclosure. In my view, disclosing your child’s diagnosis to those around them goes a long way to developing others’ understanding, tolerance and support for your child.
20. Appreciate the small successes, the small improvements, the small gains. Celebrate every small success!