How early should an early diagnosis of Autism be? Is there hope if it’s a late diagnosis? Once you have a diagnosis -late or early- the mix of feelings usually are the same – Feeling lost with all the innumerable questions, feeling guilty about all those things that happened in the past, regret for not having caught on to things early on and profound sadness.
When we are a first-time parent, we just enjoy the bundle of joy. Our world revolves around this precious life and we are looking for various new things that the baby is learning to do. We don’t actually think about what our baby isn’t doing! But it is a very different experience when we are parenting the second time round. We constantly compare and wonder why the child isn’t doing certain things that the older one did. So basically, the first time round you don’t have a reference point.
Babies grow so quickly. Every month in the first year is an event in itself. Every little milestone is actually an indication of growth and development. The time when your baby grasps your finger and doesn’t seem to let go is a very emotional moment but we don’t really understand that this is actually a reflex which has to develop further and integrate over time. Integration in this example means to grasp an object or the caregiver’s finger when the baby wants to do it and let go of it when not required. This is just one of the many developments that happen in that little body. I don’t think any new parent is aware of all this. We just know the baby should crawl in some months’ time, should walk by 1 + year, and talk by 2+ years of age. And if they don’t, we are told by people around that we should just give the child a little more time. After all every child is different! Off course, if issues are more evident like weird repetitive actions, head banging or hitting we are more likely to be at the paediatrician’s office looking for answers. The problem is, if this is not the case and the challenges aren’t as distinguishable.
Based on our experience, these are learnings that we would like to share.
- Parental Instincts must rule. We now know that it’s a good idea to just go with our own instincts. When we used to share our experiences, people around us would say “It’s going to be okay. He will grow out of it” or “He is too small, just give him some time” or “Don’t google. You are over-thinking” or “All children are like that”. When in doubt its best to consult the paediatrician and rather than being doubtful be firm about your apprehensions. Try to ensure your child has the same paediatrician for all the early years. We were in Nigeria and didn’t have a paediatrician for our child. We mostly visited a GP for his ailments and vaccines. We didn’t go beyond the medical services that were available and find a paediatrician. On one vaccination visit while in India, I remember how unsure I was when I told the doctor that I didn’t understand why my son doesn’t talk when at his playgroup, why he talks so little and the doctor said it’s probably just his personality. My child was 4, and I had so much trouble getting him to wait for our turn with the doc but when inside he was very happy to be compliant. He also said a bye to the doctor and the doctor said to me, he looks just fine. It is important to take your instincts seriously and to have a doctor who has been assessing your child through the early years; a random visit is not going to give the paediatrician any clear indications. It is also best to use the M-CHAT or Modified checklist for Autism in Toddlers and approach a developmental paediatrician if you have any concerns.
- Milestone tracking. Best to track the milestones and be on top of it. The Centres for Disease Control and Prevention in United States has a comprehensive list of milestones that we can keep track of. https://www.cdc.gov/ncbddd/actearly/milestones/index.html. Your paediatrician too will be able to provide the list. Ensure you use it as a reference but not something to stress about.
- Earlier the better. For kids as young as 18 months to 3 years depending on case to case basis doctors don’t give a diagnosis early on. They may in some cases be able to point out development delays and hint the word “autism” to the parents. The parents can with proper guidance reach out to experts. They can quickly do the required interventions like Applied Behavioural Therapy, play therapy or speech therapy for a child who is non-verbal or minimally verbal. Occupational therapy could be started for a child who has sensory processing issues. Food sensitivities and immune issues can be tested for and diets can be modified early on Without a diagnosis but just with clear pointers, parents can get started on bridging the gaps in development. If we set out to do the interventions early on, in some cases if there is a diagnosis at 18 months it may not hold good by the time the child is ready for school. In other cases where there is a likelihood of an ASD diagnosis, with early intervention you may just be lucky to prevent it. The gentleman Raun K Kaufman (https://autismbreakthrough.com/) is just one of the many who have recovered from the ASD diagnosis. For more hope and inspiration, you can look up the TACA website. https://tacanow.org/category/family-stories/recovered-from-autism/. An early diagnosis is effective only if it results in early effective interventions. These interventions should manage and treat autism.
- Acceptance is key. In India the teachers in the playgroup didn’t have concerns but in South Africa, the school we enrolled our child into picked on our son’s development very quickly. However, we were just not able to accept it quickly enough. Being in denial doesn’t help at all.
- The search. In some countries to find good quality special needs therapies is challenging. Registering with parent groups for autism can be one way of finding information on resources. For information on therapies and qualified personnel in your area, connecting with other parents with similar challenges will be the best. Finding experts to guide you is another challenge. There is help out there in the form of naturopaths, homeopaths or holistic practitioners. It is important to be organised about all the interventions and well planned in your search. You do not want to take on more than what you can handle.
- Better late than never. Our son was 5 years when we realised, he had developmental delays. While the tantrums didn’t look easy to handle by this time, other developmental delays were subtle. We were also slow in getting started on the effective interventions as the actual diagnosis came in by age 6. We regretted that we may have lost some crucial years because it is true that the human mind and bodies are very malleable in the early years. The greatest growth and changes can be seen with interventions when they are applied early on. So, is that it? Will we not be able to recover our child? There is increasing research in areas such as neurogenesis, brain plasticity and the gut-brain connection. There are also articles on how homeopathy has been able to deal with autism symptoms. I believe that given the right interventions it is possible to be off the spectrum. It may take longer because it is a late diagnosis. Someday, I hope to post a blog that reads-” The Diagnosis is finally Lost”!
The most ideal scenario would be to catch it early and get on the recovery path quickly. However, despite the late diagnosis our son has made tremendous progress. The recovery journey is hard-work but that’s a lot better compared to the other option -which is to live with the autism symptoms for life. I believe that the Autism Spectrum Diagnosis is a warning and our reaction to it can determine if it is here to stay with our child or not. Don’t let the diagnosis limit you or define your child. God forbid, if an early warning comes your way, be thankful -earlier the better and have your fighting gear on!