Autism Spectrum Disorder – from a parent’s point of view

What is autism spectrum disorder? In this post, I will attempt to answer this complex question. There are quite a few points of view on the meaning of the term.

I will define the term and explain how it gets diagnosed currently. I will try to represent different views objectively and include my own point of view as a parent to three children who are diagnosed with ASD.

What is Autism Spectrum Disorder

Autism spectrum disorder (ASD) is a group of developmental delays caused, among other things, by differences in brain development. The way neurons interact with one another is slightly different than the norm.

People with ASD have a wide range of symptoms. Some of the characteristics include problems with communication and social interaction, and restricted and/or repetitive behaviors or interests.

The reasons why a person’s brain will develop differently and express stereotyped behaviors are known, but most of the reasons are not yet. The prevailing hypothesis is that different combinations of factors can cause the development of a brain with autistic traits.

It is important to emphasize that there are no different external morphological characteristics associated with the diagnosis of autism. In the cases of certain genetic syndromes, when the communication disability is one of many characteristics, sometimes external features can appear. For example, Down syndrome sometimes also has a communication disability.

As children with ASD grow older, they may have difficulty assimilating into society. developing and maintaining friendships, communicating with peers and adults, or understanding expected behaviors at school or work.

Conditions such as anxiety, depression, or OCD are more common in people with ASD.

Autism spectrum disorder is very common. ASD is diagnosed more and more over the past years. The CDC in the US, did a study in 2018¹. On average, one out of every 44 children at the age of eight is diagnosed with ASD. The ratio of boys to girls with ASD is 4 to 1.

How is autism spectrum disorder diagnosed?

A doctor (neurologist/psychiatrist/developmental) and a developmental psychologist will both make diagnosis.

To diagnose ASD, signs of autism must be identified in early childhood. When diagnosis is made in adulthood signs have to be recalled in childhood. The person must present a minimum of behaviors that match the criteria for the definition of ASD according to the current DSM book.

Do you suspect that your child (or you) has symptoms of autism? Open a notebook and write what you see. How do the symptoms manifest in behaviors.

Make an assessment appointment with a developmental psychologist and a developmental doctor.

For a more detailed explanation on the process in Israel, go to our assessment guide.

As you can understand, today the diagnosis relies on behaviors. However, after receiving a diagnosis, the doctor can recommend a series of medical tests to give a differential diagnosis.

Physiology of a syndrome

Autism spectrum disorder is not a disease but rather a “syndrome”. The meaning is that many people have behaviors that match the diagnosis, but the root causes of the syndrome will be different from one to the other.

After receiving a diagnosis you will be recommended to do additional medical tests. It is possible you will find environmental or genetic factors related to autism. Some physiological factors could explain or even rule out the diagnosis. (There are diseases/syndromes with symptoms that only resemble those of ASD).

Today it is clear that autistic behaviors do not happen just because the child chooses to behave that way, or just because it is his personality. The physiological differences in the way brain cells communicate with each other affect the way autistic people experience the world.

A person with ASD processes the input from the senses differently, and not always consistently. The autistic brain uses different ways of thinking. As a result of the whole input-response process, the reactions to the outside are different. This is often difficult for a non-autistic person to understand.

The causes of the development of the autistic brain are not completely clear. Many studies are being done on the subject, and the information is accumulating. Slowly, the picture is starting to become a little clearer.

What are the causes of ASD?

Currently, there are known genetic components in at least 15% of ASD cases. This percentage depends on two main factors:

• the level of technology
• the number of people who agree to be tested

We also know that there are epigenetic² and environmental factors³ that have been found to be associated with the likelihood of autism. Examples for factors that affect the statistics negatively:

• certain diseases during pregnancy
• older parental age
• smoking
• and more

Due to the fact some environmental factors have been identified to correlate with the probability of autism spectrum disorder, it cannot be ruled out that ASD may not always be genetic.

Most likely, the combination of genetic, epigenetic, and environmental factors is important.

Brain structure in classic autism will usually appears normal in MRI images. The parts of the brain are in their right place. Brain cells are in the right place within the parts. But something is still different: the neural pathways between the cells and between the parts of the brain behave differently.

One of the hypotheses for this difference is that there are inflammatory processes and an imbalance of the immune system in autism⁴. These affect the neural pathways.

How can children with ASD be treated

We strive to identify and diagnose ASD as early as possible in order to begin treatment as early as possible. The goal of early treatment is to take advantage of the infant brain’s placticity. Even after birth, the brain has not yet reached full maturity.

Humans (unlike most other mammals), spend years after birth learning very basic skills. A toddler’s brain continues to develop long after birth. It is possible and even desirable to stimulate the development of the baby.

When babies show early signs of autism (even before the age of 9 months), it is recommended to take action and invest more in developmental intervention. Because they are still babies, we will initially place special emphasis on learning with movement.

We will invest throughout childhood in treatments adapted to the needs of our children. It is recommended to provide: speech therapy, occupational therapy, movement therapy, emotional therapy and more.

Spend time to learn how to manage time and money and how choose the most appropriate treatments. It is recommended to take ASD specific parenting training.

Autism cannot be cured!

Children are diagnosed only after they have matured enough to display behavior that differs from the norm. The brain has already taken shape. At this stage, the basic neural pathways cannot be diverted.

However, when we learn something new, we create a new neurological communication pathway. Autistic people also learn all the time.

With education and tailored paramedical treatments, toddlers and autistic children can be taught new skills tailored to their needs.

The goal: life skills that will enable social integration and complete independence, or at least as much as possible, in their adulthood.

Can physiology of an autistic person be influenced to reduce the symptoms?

I have a firm answer to this loaded question – yes. (I will explain later why the question is loaded)

Remember, autism cannot be cured, but new life skills can be learned.

As time passes research is accumulating a deeper understanding the physiological factors that influence the occurance autism spectrum disorder. This in turn leads to medical solutions that can affect these factors. Affecting these factors can improve the ability to learn.

For example, if according to a popular hypothesis, we balance the immune system and reduce the inflammation in the body and brain of an autistic child, his body will be more free to direct resources to the brain and invest in new neural pathways.

At the moment everything is still in various stages of research. What is possibly in the future of autism treatment? Here are some examples:

• Stem cell therapy: Treatments based on umbilical cord blood⁵ or mesenchymal stem cells⁶. (The main direction we chose for our children even though it is in research)
• Fecal microbiota transplantations⁷. Studies show that people with ASD have a unique microbiome that differs from the microbiome in the rest of the population
• Genetically tailored medicinal treatments. For example, for children with a deficiency in the ADNP gene, there is a clinical study in Israel⁸ that tests the effectiveness and safety of a suitable drug.

These are just a few examples. There are other treatments in research. I will come back to add to this list over time.

Before approaching clinical studies or private clinics for medical treatment, it is highly advisable to establish a treatment plan. The paramedical treatments are rehabilitation treatments. Medical treatment without rehabilitation will not be very effective.

Politics of autism spectrum disorder – different approaches to the integration of autistics in society

We will not forget for a moment that autistic people are first of all human beings. But ASD is a syndrome that is often associated negatively in the eyes of society.

In order to improve their social status, many organizations have arisen to this goal. However, different organizations have different approaches.

At one end – an approach that advocates education and treatments that will help autistic people integrate into society. And at the opposite end – an approach that claims society must be educated to integrate autistics ‘as they are’.

An approach of adapting behavior to society’s requirements

This approach is more attributed to the general population towards the autistic. On this side, parents, educators, and medical professionals seek to reshape the behavior of autistic people so that they can integrate into society more easily.

The people of the opposite camp see this approach as brainwashing that tramples the personality of the autistic.

Some methods for shaping behavior are shown to cause serious harm. Autistics have a tendency towards suicide and post-trauma that corrolates to the popular behavioral modification method – ABA (Applied Behavioral Approach).

A ribbon with a puzzle pattern – an autism symbol that communicates the caretaker approach. The puzzle symbolizes the mystery of autism, and the ribbon the hope that awareness of the syndrome will help improve their status.

The inclusion approach – educating society to accept and integrate autistic people as they are

Opposite to the behavioral approach, there is the “let us be us” approach. This attitude is mainly attributed to autistic people themselves. The argument is that autism is not something that requires treatment, but only acceptance.

They want society to be more inclusive of neurological diversity. One of the requests is that we use the language they feel respects them more. “Autistics” and not “people with autism”. And let’s not pretend to cure something that cannot be cured.

An infinity symbol in the colors of the rainbow. The autism spectrum disorder symbol chosen by the autistic community. It symbolizes neurological diversity in all its variety, with autism being only a part of it.

A more balanced approach (in my opinion)

My narrative is somewhere in the middle. I learn from both approaches without necessarily adopting them.

A parent’s role is to help children achieve independence in society as much as possible. I try to prepare them for life at school and later in adulthood.

At the same time, I believe that society can gain a lot from its diversity. Oppressing those who are different is not smart.

However, one of the points that distances me very much from the “let us be us” approach is that it is very egocentric and disconnected from reality.

I noticed advocates of this approach have tend to reduce the importance of social life. Integration in society is not easy, especially with ASD. But there are demands from society for survival, and even succeed.

The biomedical approach

Many from the inclusion approach oppose studies that examine the physiology of the syndrome. For them, it is forbidden to research genetics or even to consider medical treatments that can moderate the symptoms of autism. Any such intervention is a threat to their approach and is tantamount to attempted genocide.

I can accommodate the objection to the use of specific educational methods. For example, ABA which has been found to be harmful. We never used this method at home because it didn’t feel right before.

But I cannot accommodate the prevention of medical treatment for known physiological issues. Why avoid treatment for inflammation, and an imbalanced immune system and microbiome?

Our regular readers know that following the information we gathered, we preferred to provide experimental medical treatments and participate in research. Despite the opposition, I think that the contribution of medicine to autism does not come at the expense of the image that autistics build for themselves.

The biomedical approach is beginning to take shape. Yes, the science is still immature. There aretreatments based on umbilical cord blood or mesenchymal stem cells that we have chosen. And other medical interventions as I mentioned above, show potential to improve life quality of autistic people.

In conclusion

Definitions for autism spectrum disorders keep changing over time. Partly because the psychological professionals update the DSM over time and as needed. Medical professionals are discovering new information about the physiology of autism.

And on the other hand, the autistics themselves, found a stronger voice than before. They are also reshaping the definition, with the power of social media.

As parents it is important to know what autism is in all possible respects. Then we can form our positions, from which we can help our children realize their full potential.

This website represents one of mine and Shira’s tools to express our position. We wish to create the change we feel is needed in society. We are also active on:

• YouTube
• Facebook page and Hagai’s profile
• Facebook groups: ASD parenting and stem cell therapy.
• WhatsApp group for updates

I hope this article helped you understand autism a little better.

References

1. Maenner MJ, et al. Prevalence and characteristics of autism spectrum disorder among children aged 8 years – autism and developmental disabilities monitoring network, 11 Sites, United States 2018. Morb Mortal Wkly Rep Surveill Summ Wash DC 2002. 2021;70(11):1–16. doi: 10.15585/mmwr.ss7011a1. – DOI – PMC – PubMed
2. Wiśniowiecka-Kowalnik, B., Nowakowska, B.A. Genetics and epigenetics of autism spectrum disorder—current evidence in the field. J Appl Genetics 60, 37–47 (2019). https://doi.org/10.1007/s13353-018-00480-w
3. Kim JY, Son MJ, Son CY, Radua J, Eisenhut M, Gressier F, et al. Environmental risk factors and biomarkers for autism spectrum disorder: an umbrella review of the evidence. Lancet Psychiatry. 2019;6:590–600. – PubMed
4. Siniscalco D, Schultz S, Brigida AL, Antonucci N. Inflammation and neuro-immune dysregulations in autism spectrum disorders. Pharmaceuticals. (2018) 11:56. 10.3390/ph11020056 – DOI – PMC – PubMed
5. Chez M., Lepage C., Parise C., Dang-Chu A., Hankins A., Carroll M. Safety and Observations from a placebo-controlled, crossover study to assess use of autologous umbilical cord blood stem cells to improve symptoms in children with autism. Stem Cells Transl. Med. 2018;7:333–341. doi: 10.1002/sctm.17-0042. – DOI – PMC – PubMed
6. Liu Q., Chen M.X., Sun L., Wallis C.U., Zhou J.S., Ao L.J., Li Q., Sham P.C. Rational use of mesenchymal stem cells in the treatment of autism spectrum disorders. World J. Stem Cells. 2019;11:55. doi: 10.4252/wjsc.v11.i2.55. – DOI – PMC – PubMed
7. Li N, Chen H, Cheng Y, Xu F, Ruan G, Ying S, et al. Corrigendum: fecal microbiota transplantation relieves gastrointestinal and autism symptoms by improving the gut microbiota in an open-label study. Front Cell Infect Microbiol. (2021) 11:759435. 10.3389/fcimb.2021.801376 – DOI – PMC – PubMed
8. Grigg, I., Ivashko-Pachima, Y., Hait, T.A. et al. Tauopathy in the young autistic brain: novel biomarker and therapeutic target. Transl Psychiatry 10, 228 (2020). https://doi.org/10.1038/s41398-020-00904-4 https://www.nature.com/articles/s41398-020-00904-4