Autism Undiagnosed: How They Remain Undiagnosed

Autism spectrum disorder is a condition that is mostly diagnosed in early childhood. However, in some cases, it is not something very easy to diagnose. Girls with autism or high-functioning autism could remain undiagnosed. There are many different reasons behind this issue.

Even if an individual with autism may have a late diagnosis, the symptoms of autism have actually been present from a young age and may simply not be prominent enough. We are also aware that some symptoms must be evident from an early age in order to fully diagnose autism. In high-functioning autistic people or girls with autism, the situation may not be this way. Since autism symptoms are not at the desired level for a very long time or they can be hidden, they can live for a long time as autism is undiagnosed.

According to the results of some studies carried out to date, 1 out of 4 individuals with autism remains undiagnosed. The reasons for not being diagnosed can be very different. These reasons may include not being completely mentally retarded or even being of a non-white race.

The recent increase in cases of autism has made it seem as if everyone either has autism or knows someone with autism. In addition, there are still undiagnosed and unrecognized children due to their mild symptoms. These children have great difficulties in daily life because their symptoms make it difficult. This may lead to more negative consequences in the long run.

While some symptoms are easier to recognize and diagnose, it is not so easy in high-functioning autism states because they do not show as striking symptoms in social interaction and communication as other individuals on the autism spectrum. They are successful in school. They may be smarter than their peers. They get along well with their peers. Although they get along well, it is inevitable that they will be bullied from time to time because some social relationships may seem awkward to them, or they may have trouble reading social cues. This bullying can have long-term consequences. They may feel excluded throughout their lives and become depressed and withdrawn.

As a parent, you should never have a maybe. You should consider that even the smallest related behavior could be a symptom of autism and take your child to a professional. Even if social skills are developed, you need to produce long-term solutions and allow your child to develop.

To Be Able To Mask Autism Symptoms

Individuals with high-functioning autism may be more intelligent than individuals who complete their development normally. With their above-average intelligence, they become adept at masking some of the symptoms of autism. Because they are particularly good at using language and having communication, autism symptoms become much more likely to be undiagnosed.

Some individuals with autism may begin to exhibit more pronounced symptoms when they start to change locations and interact with people. For example, each time a class is skipped at school, the increased use of abstract processing and language can tire them, and autism symptoms begin to be observed more strongly.

High-functioning autistic individuals develop their own tools to hide their autism symptoms. They are more successful in suggesting themselves than other individuals on the spectrum. In this way, they can make eye contact with others or become adept at hiding their repetitive behavior.

Early Misdiagnoses

Despite having autism symptoms, it is very common to misdiagnose these symptoms by confusing them with other disorders. The fact that there are many different disorders accompanying autism can be said to be the main reason for this. These conditions are usually ADHD, OCD, or SAD. When children who are diagnosed with these diagnoses at an early age and treated accordingly are diagnosed with autism at later ages, it may be too late to control some symptoms.

Broadening the Definition

Even though it is not something with the individuals themselves, broadening the definition is another explanation for why people remain undiagnosed. High-functioning autisms may not have been included in the literature when they were first diagnosed. Even if there are changes in the process, they can continue their lives in this way because they do not get the diagnostic tests again.

In addition, the individual with high-functioning autism may have received a different diagnosis. But this diagnosis may not have affected their lives that much. And in their adulthood, they may not even have thought of looking for a new diagnosis.


At the point of being diagnosed with autism, women and girls lag a little further behind. Boys are diagnosed 4 times more often than girls. Although the reasons for this are not clear, we can say that cultural reasons take the first place. This does not mean that girls are less likely to have autism. Because autism symptoms are considered more likely and normal behaviors in girls, parents do not consider these symptoms as autism.

At the point of being high-functioning autism, girls may remain undiagnosed because they are more successful in adapting and imitating than boys. Women are more inclined to exhibit social behavior than men. So, it can be said that being a female increases the getting diagnosis.

In addition, according to studies, although girls with autism have become adept at hiding their symptoms from adults, they are more aware of the problem with their peers who have normal development and tend to exclude them. Repetitive behaviors in girls with autism are not typically associated with autism. Autism manifests itself as emotional problems rather than behavioral problems in girls. Therefore, it is argued that current diagnostic tests cannot fully detect autism in girls.

Cultural Background, Ethnicity, and Income

It is a little more difficult for children from financially disadvantaged families to be diagnosed with autism. There are some main reasons for this too. Most obviously, parents who are not financially capable also have limited access to health care. Limited access also makes it almost impossible for an already undiagnosed child to receive services.

Another reason is the cultural background. Although it may seem not very relevant, some societies do not want to accept that their children have autism or believe that high-functioning autism is caused by being overly intelligent and do not take their children to the doctor so that they can get the correct diagnosis.

Life Stories From Men Who Remained Autism Undiagnosed Until Their Late 40s

After spending most of his life trying to adapt to society, Barney could not resist his wife’s insistence when he was 49, went to the doctor, and was diagnosed with autism. It was only after he received this diagnosis that he understood why he was having such a hard time.

As a child, Barney clearly remembered his parents’ reluctance to enroll him in a new school. Because his parents thought that their children would be ostracized by their classmates. Barney was very good with words but had no contact with his friends. He lacked both empathy and social skills.

As he reached adulthood and was old enough to have his own family, job, and home, he found that he was starting to grapple with more disastrous thoughts. Because of this, he felt more depressed and inadequate and became more lonely. All of this was starting to affect his physical health. Barney, who was a congenital asthmatic, had also started to increase in asthma attacks.

After years, Barney, who could not stand his wife’s insistence, decided to go to a professional. After meeting with a psychologist and passing certain tests, Barney was eventually diagnosed with Asperger’s syndrome. Receiving this diagnosis was a relief for Barney in a way because it provided a logical explanation for the mismatch he had been experiencing all these years.

At about the same time as Barney, Robert, a BBC journalist, was diagnosed with autism at the age of 53. He tells that he always wondered why he did not understand other people and why they did not understand him, but how relieved he was after receiving this diagnosis.

For most of his life, he had been hearing phrases such as you are very special or you are from another planet. He had always thought it had to do with being an only child or being sent to boarding school and spending his childhood alone. Unlike his peers, Robert was a boy who liked to study maps, liked to read about railways, and was not good at sports. That’s why he was always ostracized by his friends.

When he reached adulthood, he had difficulties communicating with others due to both the traumas from his childhood and the presence of autism. Parties were a nightmare for him. He couldn’t understand the feelings of others, and he didn’t understand why he couldn’t empathize. He realized what was wrong with him while watching a program about autism on TV.

The ability to communicate that people with autism lack was also true for Robert. And while watching that documentary, when he saw that people who seemed to be perfectly normal were also diagnosed with autism in their later years, he had an enlightenment and realized how much he had in common with those people. Therefore, when he was diagnosed with autism, he experienced tremendous relief. He learned what it was that made him feel like an alien for many years. He didn’t feel bad because he was different now.

Barney and Robert are just two of many adults with autism who spend most of their lives excluded from society and do not know why they are different. The acceptance of autism as a disease after the 1980s caused many autistic individuals born before these years to spend their lives without being diagnosed correctly. Autism was only classified as a mental disorder in 1980, and people born before that date lived for years without being properly diagnosed.

In addition, living in their 40s or 50s without a diagnosis of autism can have very traumatic effects on adults with autism. These diagnoses also take a long time to be diagnosed compared to being diagnosed with autism at a young age. Sometimes it can take months or even years. It can cause huge losses in terms of both time and money. However, finally being able to get a specific diagnosis offers invaluable relief for these adults.

Studies show that being diagnosed with autism spectrum disorder at an advanced age can have a very positive effect on the person. This gives these individuals the opportunity to let go of impossible struggles and discover their true identities. But for many people, this diagnosis may be accompanied by great regret. This is a condition that will affect many people differently, just like autism itself.

Autism Diagnosis and Awareness

Every child with autism is unique and different. Children with autism are told their disorder is ‘autism spectrum disorder’. The reason for this is that all children with autism are different from each other because it is not possible to talk about a standard or all the same situations in autism. Because the word autism and its diagnosis can come as an emotional shock to many parents, the way this condition is shared with the family is also important. If there are some developmental difficulties, the way of explaining the situation to the families is preferred by using the example of a flower. For example, we have a flower, but it cannot develop fully; If our flower cannot develop, we need to take care of its water and soil more; This flower is not like other flowers, if it continues to be neglected, it can be said that it has difficulty in growing.

We know that the cause of autism is mostly genetic. When the situation is explained genetically, most families may think that “our parents or we did not have autism, why did our child have autism”. This expression can be misunderstood in society. Autism is related to genes, but that doesn’t necessarily mean parents will have autism. This starts from the womb. Exposure to certain drugs or substances, viruses, infection or radiation during pregnancy, advanced parental age, or other environmental factors is effective in the emergence of the disorder.

The only way to diagnose autism is an expert examination, opinion, and observation. In other words, according to the age of the child, social skills such as language skills and establishing human relations and their level in all these areas are diagnosed by both clinical examination and interview with the family, and by watching and observing the video recordings of the children at home or in the nursery. In these observations, it is observed what the child can and cannot do according to his/her age range, what skills he/she has and how much he/she has, and various developmental tests are conducted. The results must be evaluated by a child psychiatry clinician.

One of the most important things for families to do is to have information about their child’s development, follow them closely, and be aware of the areas where the child has difficulties. They should regularly take their children for medical checkups. Of course, this is something that can be achieved with curiosity, interest, and education. Parents should trust their parenting intuitions and instincts and consult their specialist physicians about their concerns about their children, regardless of the environment.

Contrary to the news in the media, there is no direct relationship between autism and nutrition. However, some digestive system disorders can be seen frequently in children diagnosed with autism. This is a condition that can happen not only in autistic children but also in other children. A healthy diet is important for people of all ages, not just children diagnosed with autism. Families are open to being deceived and abused by malicious people in the market with the effect of panic and shock. For this reason, they should definitely get support from specialist physicians before deciding on the methods recommended to them.

It is a fact that more studies should be carried out on autism awareness. Autism awareness is not only an awareness of families but also a situation that public institutions, universities, and health institutions should be aware of. In this sense, it is undoubtedly very important to carry out studies to increase the awareness of society. It is very important to raise awareness of our public institutions, institutions, kindergartens, and health workers. In this sense, the awareness of different professional groups, from physicians to educators, who interact with children, will make a big difference.

Today, there is an opinion that certain environmental conditions increase the prevalence rate of autism. In fact, it is said that autism is largely caused by genetic factors, but when some environmental risk factors are added to this genetic predisposition, the risk of autism increases. Again, the risk of autism may be increased in some chromosomal diseases or defined as genetic syndromes or neurological syndromes.

The increase in autism awareness in recent years is one of the reasons why the incidence of autism has increased. Rather than a real increase, there is an increase in society and people’s awareness of autism. This disease undoubtedly existed in the past, but it was not named. Today, increasing awareness is a factor that increases the incidence of the disease.

Tom’s Fidgets Original Flippy Chain Fidget Toy – Perfect for ADHD, Anxiety, and Autism – Bike Chain Fidget Stress Reducer for Adults and Kids

It is a tiny toy to keep hands busy while under stress or having anxiety. It consists of bolts and rings attached to each other in order to flip and spin them. It is very helpful in terms of autism, ADHD, or any anxiety-related disorders. Apart from as a therapeutical toy, it can be used in order to stop smoking or biting nails. It is also very silent while you are flipping or spinning. There are different colors available to choose from in terms of individuals’ preferences. They are made of high-quality material which is stainless steel. It is not easy to break them. Overall, it is definitely worth the money you are going to spend.

Ganjiang 6 Pieces Squeeze Bean Keychain Fidget Toys Pack for Both Children and Adult

It is a perfect keychain for those who need sensory stimulation in their lives in order to keep themselves calm while they are in anxiety or having stressful times. It is maybe the cutest way to make yourself calm. They are adorable keychains. The only thing you need to do is squeeze them to pop up the attached beans. With its convenient design, it is easy to carry everywhere with you. Apart from its psychological help, it helps to enhance the strength of your thumbs and ankles when you squeeze them. It is also a cute and great gift alternative at a highly affordable price.

Boho-Magic 925 Sterling Silver Spinner Flowers Ring for Women Fidget Anxiety Relief Ring Band

It is one of the fidget rings you can find on the market. You just need to spin the outer part of the ring around your finger when you feel overwhelmed, anxious, or nervous. This spinning movement helps you to calm yourselves and relieve anxiety. It has calming effects on you for sure. With its convenience and beautiful design, you can take it everywhere with you without any hesitation. It is very comfortable to wear at the same time. There are many different sizes to choose from according to your finger sizes in order to wear them comfortably. It is made of sterling silver which makes it high-quality. You can wear it for a long time. It is a great gift alternative as well.

Tangle Relax Therapy

It can be the easiest and the most functional fidget toy you can find on the market in order to keep yourself calm. It keeps your hands busy for a long time, anxious-free, and unaware of the situations in your environment. It is ideal for both children and adults. In terms of adults, it is used for psychological reasons. In terms of children, it is used for physical reasons such as improving fine motor development. It is made of soft and latex-free materials. It is easy to carry everywhere. 

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