There is a concern among parents that we may be over-diagnosing our children with medical conditions that they do not have. I understand that concern. I, myself, have also raised concerns about the over-diagnosis of ADHD because it seems a convenient diagnosis for normally active children. But as much as we do not want to label our children out of a real or imagined fear of what it might mean, it is also a concern when parents refuse to acknowledge the possibility that their child may have a disorder. Burying our heads in the sand and refusing to acknowledge a problem exists is harmful for our children’s development. One such condition that I want to bring attention to is the Autism Spectrum Disorder, also referred to as ASD.
I felt compelled to write about ASD after discovering that some parents would prefer to pretend that everything is hunky dory than to acknowledge the possibility that their child may be suffering from ASD. I know I have written in the past about being cautious regarding diagnoses of ADHD. This is because medicating for ADHD has serious implications for the child that has been misdiagnosed. Given the ease of misdiagnosis for a condition that is often ambiguous and the indications that early drug therapy may not be all that beneficial, it makes sense to be cautious. ASD, on the other hand, is a very different condition. ASD is a case where early diagnosis can have a significant impact on your child’s life and any intervention will be beneficial. Even in the event of a misdiagnosis, no harm is done. In this case, it makes absolute sense to “get in early”.
Children with ASD can Improve Significantly with the Right Help
I won’t pretend that I can even comprehend what it must be like to raise a child with ASD. I can imagine it to be my most difficult day alone with my two boys multiplied by a factor of ten but on a regular basis. As difficult as it is to raise a child with ASD, it is important to remember that there is a lot we can do to help children with this condition. With the right care and attention, children with ASD can go on to lead normal lives.
Growing evidence suggests that a small minority of persons with autism progress to the point where they no longer meet the criteria for a diagnosis of ASD.
You may also hear about children diagnosed with autism who reach “best outcome” status. This means they have scored within normal ranges on tests for IQ, language, adaptive functioning, school placement and personality, but still have mild symptoms on some personality and diagnostic tests.
We also know that many people with autism go on to live independent and fulfilling lives, and that all deserve the opportunity to work productively, develop meaningful and fulfilling relationships and enjoy life. – Autism Speaks
Early Detection of ASD is Important
The best outcomes for a child with ASD require intensive early intervention. With ASD, the earlier you seek help for your child, the better it will be for your child.
Intervention at an early age by a team, which may include a special educator, speech and language pathologist, occupational therapist and/or a physical therapist, depending on the child’s needs, is critical. – NYU Langone Medical Center
Scientific studies have demonstrated that early intensive behavioral intervention improves learning, communication and social skills in young children with autism. While the outcomes of early intervention vary, all children benefit.
We do know that significant improvement in autism symptoms is most often reported in connection with intensive early intervention. – Autism Speaks
The Risks of Not Treating a Child with ASD
What happens to the child with ASD who is not treated? Depending on severity, undetected or untreated autism may lead to:
- Daily routine functioning and self-care at a low level
- Cognitive and language limitations
- Problems with school adjustment
- Poor social relationships
- Inability to live independently
Even if you have a child with high-functioning ASD, your child will still benefit from having a diagnosis and being provided with the care to help your child cope with this condition.
In a Letter From An Adult Male With Asperger Syndrome, Richard Rowe expressed what it was like for him growing up and living as an individual with Asperger Syndrome (a form of high-functioning Autism – now under the umbrella term of ASD).
“I have always been prone to mood swings. Ranging from severe depression, resulting in up to 3 to 4 days of uncontrollable crying and sobbing, to short bursts of Absolute and quite irrational anger… I think I have called “please help me” alone in the dark in tears at least a million times in my life. I never knew I had ASD or indeed even knew of its existence until my son was diagnosed with ASD five years ago. He is now nine years old, living with my ex-wife and (reasonably) well adjusted for a child dealing with Aspergers Syndrome.”
The realisation that he was suffering from ASD was both liberating and frustrating for Richard Rowe. It was liberating in the sense that he could now understand why he felt the way he did growing up. It was frustrating because he felt a loss for all those years when he did not know about his condition and how differently his life might have been if he had known.
When my son was diagnosed as having Asperger’s Syndrome, I was able to read some of the literature regarding his condition. Upon reading a couple of books it soon became apparent where the root source of my own problems lay and subsequent investigation proved these suspicions to be well founded. At first my reaction in regard to myself was one of relief at finally having some kind of tangible definition for what I had been feeling all these years.
The relief was soon replaced by mixed feelings of remorse, frustration and helplessness. For a while I felt “ripped off”. I felt that 40 years of my life had been stolen from me and that, had I known about ASD from the beginning, my life could have been vastly different. Maybe I could have understood myself a little before now and maybe others could have too. I can, at least, find solace in the fact that my son now has that support from childhood.
For an individual suffering from ASD, it is a very lonely and isolating experience – one that our children might be spared from if we can recognise it and help them from an early age. The important thing is to recognise that it exists and to get help.
I think Debbie Page, a mother of a child with ASD, said it best:
“My message to other parents is this: Just listen to your instinct and gut. No help you get for them is going to hurt them. Erring on the side of caution and getting early help will not bite you. There is nothing wrong with trying this, even if you don’t yet have a diagnosis. If your child’s communication is not developing, get help for that. You don’t need for everyone to agree on a diagnosis to start getting help for your child.”
Getting Help for Your Child
Autism Speaks is a great website for finding information on Autism. For support groups and organisations that help families and individuals with ASD in Malaysia, you can start here:
- Early Autism Project provides individualized intervention treatment programmes for people on the autism spectrum.
- Hua Ming is a non-profit organisation focusing on providing special education, training and therapy for autistic children, as well as counseling to their parents.
- Autism Link provides comprehensive Applied Behavior Analysis (ABA) therapy to individuals with ASD.
- Autism Aspergers Help Association (AAHA)
- IDEAS Autism Centre
- Keeping a Child with Autism Safe
You can also follow Spectrum Mum in Malaysia who shared her journey with her two daughters.
Also available are these centres for children with special needs: