When you are raising children, an autism diagnosis can knock you off your feet. It means lifestyle change, not only for you and your child but for your whole family.
If your child has just been diagnosed with Autism Spectrum Disorder (ASD), you understand exactly what we are talking about.
At this point, maybe you’re feeling a slight sense of relief. Maybe you’ve discovered the bug that has been eating up your little one all this time, and to be honest, it is better this way than not being in the know. Knowing your child is suffering without understanding the cause is frustratingly scary.
Firstly, Autism is a spectrum disorder, which means there is a wide range of symptoms and complications from child to child. While commonly it is known to delay or impair behavior, language, and social skills, it will affect each child differently. It could affect speech in some and in others cause isolation. Some still may find it difficult to relate with others. There is also PDD (Pervasive Development Disorder) and Asperger’s Syndrome which are typically considered to be milder versions of ASD but still fall under this category. Autism shouldn’t be ignored. If unaddressed, it could delay important development skills and milestones in your child.
Rather than sulking, pity-partying, or being in a dilemma for the rest of your life, you have opted to take the lemons life has given you and make lemonade. Although there is always that first negative or shocked reaction to such a diagnosis, it is how you come out of this stage that will determine how well you and your child will work together through autism management.
“Where do I begin?” is the question most new autism parents will be asking.
1. Resolve is where it begins
While you will need your time to let the news sink in, remember your child still needs you. If you can’t help feeling that this is not what you had intended, you may want to consider getting some extra help. A partner, friend, relative, perhaps even your doctor may be the push you need to come around.
Accept that autism is a condition you have to deal with for the rest of your life, so being optimistic from the get-go is paramount!
Times could get tough ahead, but who says you can’t come out strong? It is common to feel like you have to fix things right then and there.
Take it slowly, one step at a time. You are learning about your child in a whole new way.
2. Build a network
The beauty about this world is this: Whatever you are going through; no matter how alone you feel, someone else has been through it too. There is always someone to relate to that can help your experience. Joining a support group of people in the ASD journey can be immensely beneficial. Among them, you’ll find parents both who are as new in the journey as you are and others who are veterans.
Take your time and find parents, children, and teens alike to connect with. Go beyond, to knowing them personally, reading their articles, books, and blogs, and watching their videos.
There are two sides to networking: going out to interact, and interacting digitally. Both are beneficial.
Remember that there are times when you may be tempted to isolate and be alone. This is the time to hear what others have to say.
3. All advice is good, but not all of it is good for you
While even the very networks you are a part of can be a good source of consolation or information, the fact is that everyone has a unique experience. This is because, as we mentioned earlier, autism is characterized by a group of similar symptoms, yet because it is a spectrum disorder, it will affect different children differently.
As you search for what may work for you, stay away from advice that claims to cure ASD. These have no known scientific backing. Again, you may have many leads to therapies or therapists out there; however, if you don’t want to or if you have a bad gut feeling, you don’t have to try. Think only of what will fit your lifestyle, values, your spouse, and your family.
Those close to you will genuinely want to help out of sympathy. Try to be polite and appreciate their effort. However, what you do with all the information you receive is up to you.
4. Information is empowerment
Let’s face it: The internet, fortunately and unfortunately, is the most readily available source of information you can access at any time. While you may land some great resources here, you are equally likely to find misleading information. Whenever you are unsure, your doctor, ASD professionals, and even your networks can offer some great leads to credible sources of information.
Besides learning about this condition and people’s experiences, also learn about state law, school polices, and financial implications of taking care of an autistic child. The idea here is to be familiar all around with ASD. Planning accordingly will make for the most beneficial treatment.
Further on, be as open as you can with your doctor or ASD specialists. Follow up with them on how best you can move away from the ‘label’ of autism, and move on to identifying and addressing the specific challenges your child could be facing. Identifying and building their strengths will be the most important part of both their childhood and autism management.
5. Help your child’s special abilities shine
If you can discover your child’s strengths like we mentioned above, you will be amazed at how much potential lies within. This is the point at which you don’t treat him/her as a child with special needs. Your child is as normal as any other; he or she only needs a little extra love to do challenging things. After all, this is how children grow.
Secondly, while at some low points of life, your child may back away. It is not true that this is the only nature of autism. By understanding their interests and connecting with them, you will realize that withdrawal is just a cover that can be stripped off. We all know that routine begets comfort in any child, so by all means, observe play time, time-outs, eating habits, and bathing habits. Understand why they do the things they do.
Is autism treatable? Yes, absolutely.
You just need to get your hands on the right professional, information, therapy, services and treatments.
6. Find what works for you when it comes to relieving pressure
When it feels like you are devoting 100% of your time (and then some!) to learn how to care for your child with autism, burn-outs are inevitable. When this happens, think about how much attention you’ve been giving to yourself lately. Let others help you. Slow down a bit and have some alone time. It will be therapeutic.
How do you love to unwind?
Yoga, reading, fishing, working out, cooking, or blogging? It’s time to get in touch with your pastimes and let life be. If it helps, schedule these relaxation breaks so you don’t get caught up. Don’t be ashamed or feel guilty to make some time for yourself.
How can you provide the best love and care for your child when you don’t do so for you?
7. Figure out the finances
Something that can be overlooked during planning is the financial implication of taking care of your child with autism.
Therapy can be expensive. Think of how much you will spend on your psychologist, therapists, doctors, and even counsellors. Don’t fret. Work with your specialists and your insurance company to come up with a plan that is right for you.
Now may be a good time to really crack down on budgeting. Utilize those resources!
8. Let’s talk therapy
Therapy is certainly at the center of anyone’s life with ASD, and selecting the right one is the most critical decision you will ever make for your child. But don’t feel guilty when you make a wrong decision. There is always room for learning and making things right.
Here are a few tips for therapy:
- Consider evidence-based therapy programs, as they have been tried and tested by scientists.
- Go for ability-appropriate or age-appropriate programs for your child. Be as specific as you can during your selection. There is never a one-size-fits-all therapy.
- Count the cost cash-wise and time-wise. There is no point in creating other stressors in your life while trying to find the perfect therapy.
- Qualifications are important as far as service is concerned. Find qualified and experienced professionals as your providers.
- Go for programs that will meet your needs as a parent. At the end of the day, you know your child better than anyone else. All you need is some help bringing them up.
9. Shrug it off
In the process of it all, you might bump into a few people who feel you are not doing the right thing. They are not worth your time. Learn to shrug off their comments, and you will thank yourself later.
10. Get out and about
You know how tempting it can be to isolate yourself and your child after diagnosis. This is not to say you are ashamed of their condition, but you may instinctively want to cut your outings, shopping, and other trips that were once routine.
It may not be the simplest of things to do, but psychologically, behaviourally, and socially, going out is a bold step towards supporting your child to develop. Start small, perhaps by simple grocery trips, and then slowly introduce parties, sporting events, camping, and whatever else you enjoy as a family.
Eventually, your child will cope with anything new introduced in his or her routine, and this will only help to strengthen development.
The bottom line
Your child needs love and patience more than the pressure to fit into their circles. After autism diagnosis, you and your child are working hard to do what’s best for your family. Try your best to live in reality. You may have wanted every good thing for your child, but achieving this will be a bit more difficult. Still, never lose yourself in the journey.