Today, April 1st, marks the beginning of the World Autism Awareness Week. So, let’s talk about what parents can do after an autism diagnosis.
In this post we will talk about what is autism, how it is diagnosed and what should you do if you receive an autism diagnosis for your child.
What is Autism?
Autism is the common name of a developmental disorder that starts to manifest early in the child’s life. Although we usually use the name Autism in a uniform manner, we are actually talking about a range known today as Autism Spectrum Disorders, or ASD for short. It’s important to keep the “spectrum” in mind, because usually when you see two autistic children, you can see many differences between them.
Some children will have a very mild variation and will be placed on the more functional side of the spectrum. Some will have a more severe variation that will manifest in many more difficulties. Each child will need a different set of treatments and his or her family will face a different set of struggles.
Conducting an Autism diagnosis is not an easy feat. ASD is a complex disorder that has many touchpoints in the life of the child and his or her family. Therefore, if you have any suspicion regarding your child, you should consult a professional trained in autism diagnosis.
Describing what autism is and how does it look is out of the scope of this post. However, here are some of the most commons signs of an autistic spectrum disorder. But please remember that if your child has any of these, it doesn’t mean anything. Don’t diagnose by reading blogs. Go to a professional.
- Problems with Communication – both verbal and non-verbal
- Social Withdrawal
- Repetitive and/or Rigid Behavior
- A Narrow Range of Interest
(If you want to read more about the signs and process of an autism diagnosis, here are some useful references: What Does Autism Look Like? || Screening and Diagnosis of Autism Spectrum Disorder || What are the signs of autism?)
Am I Responsible for My Child’s Autism Diagnosis?
As of today, in early 2019, we still don’t have a good answer to the question: What Causes Autism?
There’s a lot of research on autism diagnosis and treatment, and new data and conclusions appear all the time, but we still can’t place a finger on the root causes of autism. And because autism diagnosis rates have gone really high in the last decades, many people are pointing blaming fingers in many directions.
As parents, if you received an autism diagnosis, you may ask yourself if you have done something wrong and caused your child’s diagnosis. Carrying that blame is an awful weight to barry, so let’s get it right of the bat: autism is a neurodevelopmental disorder and you did nothing wrong that caused it.
You may have heard that vaccines cause autism. They don’t. There’s not a question about it. This is a myth propagated by lies and deceit. If you want to learn more about it, this post by The Children’s Hospital of Philadelphia is really useful.
In the previous century, there were some psychoanalytic theories that blamed mothers in being too emotionally cold and thus creating their children’s autism symptoms. This also is not the case. It doesn’t work like that. Again, autism is a neurodevelopmental disorder that is probably something you born with and it’s definitely not a result of how you behave with your child.
Can Autism be Treated?
Although there’s nothing you did to make your child autistic, there are definitely things you can do to help him or her after receiving an autism diagnosis.
The general consensus these days is that ASD can be treated, but not cured. This means that your child will probably live with autism for the rest of his or her life. However, treatments are available and can boost your child’s development and help him or her reach their peak potential and live great lives.
The general rule of thumb is that you should start treating your child as soon as possible. Research has shown that when you intervene early in the child’s life, you can help him or
If you want to read more about what does success mean for autism treatment, read this wonderful post by Spectrum.
How is Autism treated?
If you Google “treatments for autism” you get millions of search results. This can be really overwhelming. There are many methods who claim to be the best for treating autism. Some even promise unbelievable results and surefire cures.
But I cannot stress this enough. If you really want to help your child you should go see a medical or mental health professional with certified knowledge and experiences dealing with autism.
Autism is a complex disorder. It has many symptoms and consequences. There are many ways to tackle autism but you’d be better off with someone who can look at the holistic nature of your situation and guide you with what is known and proven to help.
My best advice for you is to look for the mainstream organizations in your area and check what treatments they offer. There are many alternative methods that people try to use, and some of them can be really helpful, but only in the context of a holistic approach that puts the evidence-based knowledge in the center.
Remember, as soon as you get an autism diagnosis, you don’t want to waste those precious years because starting the consensual treatment later won’t do as good as starting it early.
The Power of Integration
The psychological world offers two main ways to think about and treat autism. One is a dynamic-analytical way of thinking, rooted in the works of child psychologists who also worked with other children. One of the main methods is known as DIR Floortime Therapy DIR stands for Developmental, Individual-differences & Relationship-based. The other is a behavioral approach known as Applied Behavior Analysis (ABA), which is aimed at helping the child gain new behavioral ways.
None of these is THE BEST way to treat autism. I don’t think there’s a best way to treat autism, because the best way is the one which is integrated to see and deal with the specific needs of the child and his or her family. So, when you look for treatment, you should consider those treatments which are more integrative.
What Should I Do After an Autism Diagnosis?
So, if you recently received an autism diagnosis for your child, you may be wondering what to do next. As I covered above, you should start looking for treatment. Where and how to do so may vary between countries and states, so I encourage you to do two things:
First, consult with your pediatrician and ask about the local options and organizations dealing with autism treatment.
Second, contact those organizations and check what are your options and also what are your social rights. For example, where I live, the social security system funds treatments for autistic children, relieving some of the financial stress.
Focus on the Present
As soon as you receive an autism diagnosis, you may find yourself stressing about what will be in the future. Thoughts like “Will he be able to get married? Will she have a job?” may feel your mind.
Those are valid and important questions but there’s not much you can about them at the moment. And as a good friend of mine who raise an autistic child once told me: “Know that every child can surprise you”.
I don’t say that you should avoid those thoughts completely. I know that you can’t stop yourself from having them, and that’s fine. We can just delete unwanted thoughts from our minds. But if you read my posts about mindful parenting you know that there are things you can do to deal better with those thoughts. You can learn more about what you can do if you download my free mindfulness exercise guide.
Taking Care of Yourself
If you really want to be there for your child, give yourself the help you need. Just as the inflight safety videos instruct us that in the case of a loss of cabin pressure, we should first put the oxygen mask on ourselves and then on the child – also here, if you as a parent have no air, it would be really hard for you to support your child.
Mind Yourselves – You Matter
Adjutsing to this new situation is not easy, and you may find yourself dealing with many emotions such as guilt, anger, frustration and more. If you have a spouse, think about taking care of yourselves as a couple.
Find a good therapist who can provide you the space to consult and work through your own emotions that may arise between you and your spouse.
Remember, it does get better. You can have a full, rich and meaningful family life. There's no reason you won't.
Don’t be alone, find other parents
Getting an autism diagnosis will transfer you into a new world. This may seem overwhelming, confusing and scary at times. You can and you should get professional help to deal with this new world, but remember that you are not the first person to enter that world. Many parents have been there before and they can really help you.
Think about looking for knowledge and support groups for and by parents. You can also find online groups on dedicated websites or on Facebook. But remember that you should enter a group only if it feels right for you. Decide for yourself how much you want to share with other parents, and what are your own boundaries.
Allow Yourself To Breathe
Taking care of children is a hard work. Taking care of children with autistic spectrum disorder can be even harder. Allow yourself to take some time off every now and then and breathe. Taking the time to have a quiet weekend with your spouse, for example, can do wonders.
Episode 317 of the podcast This American Life tells the moving story of two parents who had to deal with the condition of their child's autistic disorder.
Click here to listen to act 2 of the episode, Hit Me With Your Best Shot.
Don't Forget The Siblings
Having a child with an ASD diagnosis can be taxing. You rush from one doctor’s appointment to another. You have to deal with the difficulties of the day to day struggles your child is going through. You have to deal with the environment who may not be so accepting of your child’s behaviors. And you have your own thoughts and feelings to deal with.
If you have other children, they may sometimes fall between the cracks. You must keep that in mind and work to find a way to be with your other children and make them feel seen and noticed.
Conclusion
Getting an autism diagnosis is
Also, as parents you have a lot on your plate and you should really find the ways to take care of yourself, so you could be there for your child (and other children if you have them).