Descriptive and exploratory field research with a qualitative approach was developed to describe the experiences of family members of children with autism. The descriptive study is carried out to describe the characteristics of a given population or phenomenon. For this, it uses standardized data collection techniques, such as the questionnaire and systematic observation; while, the exploratory study allows greater familiarity with the problem, to explain it.

The participants in this research were 18 relatives of children with autism, including people who lived in the same household, irrespective of blood ties. This number was defined based on the criterion of saturation of information in the speeches. The saturation of the speeches is reached when the content of the collected material begins to be repeated so that the obtaining new information has little relevance for research.

For the selection process of the participants, the following inclusion criteria were considered: individuals over the age of 18, and who were family members living in the same household for at least 1 year with the autistic child. As an exclusion criterion, family members who were emotionally fragile at the time of the interview, such as crying, having lack of emotional control, high level of anxiety, or other psychological conditions that prevented the development of the interview, were excluded .

The data of this research were collected in the months of September and October 2019, through a semi-structured interview with an average duration of 20 minutes for the interviewees to answer the questions.

The interviews were conducted in a reserved place to avoid the embarrassment of the participants, and they were identified through codes without revealing their identity. Family members were coded by the letter F and the respective number of the order of the interviews. The data collected were recorded using an advanced and comprehensive IOS smartphone device with excellent features and innovative functionality.

The present study was analyzed through content analysis [4], which is defined as a set of methods for the analysis of communications through systematic and objective procedures of presentation of the content of the messages.

The content analysis technique is divided into three fundamental phases. The first phase, pre-analysis, consists of an organization stage, which involves reading to select the documents that will be used to formulate hypotheses; thus, in case of interviews, these are transcribed and they constitute the corpus of the research. The second phase represents the stage of exploring the material in order to select the messages and categorize classes that bring together a group of elements of common semantics, grouping by the sense of the words. Finally, in the third phase, the results obtained are interpreted [5-9].

The research was approved by the Research Ethics Committee under the opinion no. 3,571,583.

The diagnosis of autism caused varied feelings in the family members of the child. These experiences sometimes brought negative feelings such as frustration, difficulty, denial, pain, grief and prejudice, as noted in the following statements:

[...] Parents who have a special child, whatever it is, this is something that becomes traumatizing, frustrated because you create an expectation in relation to that child (F. 01)

My experience was of difficulty because I have two children with autism and they are totally the opposite from each other (F. 11)

At first, it was complicated. I didn’t want to accept it (F. 12)

[...] I received the diagnosis, it was tough; it was very painful (F. 13)

[...] There is still a lot of prejudice because you only know how prejudice is when it is with you [...] it was not easy, I would cry, you need to have patience that you do not know where you get it from (F. 16)

[...] When you discover the diagnosis, you live as if it were a grief, because when you have a child, you think a lot of things for him, you create a lot of expectations and when you discover that the child has a problem, like autism, you feel sad and experience that period as if it were a mourning (F. 17)

On the other hand, there were also positive feelings towards the autistic child and the discovery of the diagnosis, because although the family faces a daily struggle, there are significant feelings of affection and dedication of the family members, as represented in the following statements:

It is a rich, joyful experience, but there are difficulties. [..] She is very intelligent, we believe she can have a good development in the future; her independence worries us and causes us anxiety (F. 02)

[...] the interaction is pleasant, there are difficulties related to him, but we are his partners, so for me it is a good experience as a mother (F. 03)

[...] It is gratifying because we also learn from them (F.15)

Furthermore, the study participants also reported feelings of neutrality regarding the diagnosis of children with autism. These participants believed that previous experiences of some other conditions led to the functional impairment of their children as a kind of preparation for the current situation of having a child with autism.

My son was five years old when I discovered his diagnosis; the impact was not so great because there was a diagnosis of intellectual disability. Because of that, I felt somehow prepared (F. 10)

I received the diagnosis of my son at the age of five; it was not such a big impact because I already had already received his diagnosis of intellectual disability and mental retardation (F. 14)

This category discusses the daily lives of family members, including the difficulties that are faced. Daily interactions are particularly difficult, requiring patience and exclusive attention to the child. The level of dependence of the child sometimes varies because it depends on the degree of autism; the greater the degree of autism, the greater the dependence.

[...] Our life today is a struggle after trying to improve each day and life becomes a little tiring; only those who have a disabled child know how tiring and stressful this can be; there are moments of crisis, lack of understanding when the child is autistic and they have a kind crying crises, impatience and you have to know how to interpret them. This is the most difficult part. Everything in life is tiring. (F. 01)

[...] at home, we bear his way; the problem is when we go out, the behavior is different, at home he has agitated behavior, when we go for a walk, he throws himself on the floor, screams, wants things his way. We have to be very patient because we really run out of patience. (F. 05)

[...] so my greatest difficulty is getting his rights respected and making people understand that he has a disorder, and because of that, he has a deficit to do some activities. (F. 07)

[...] we are trying to live with it, live with his routine. There are obstacles. (F. 08)

[...] My son injures himself, and it is very difficult to see that happening; the society interprets that as if an autistic person were a freak and had to be isolated from the world, because society is normal and they are not normal. This is not easy for me at all. (F. 09)

[...] Taking care of a child with special needs is not easy, we have our limitations and he has his own; we have to know how to deal with, and we need to have a lot of patience to deal with that, but there are joys, every new thing they learn it is an achievement, for us it is even more than for him, we face many obstacles for their sake. (F. 10)

[...] this is complicated because I am by myself with them and sometimes I have difficulty taking them to the treatment, to school, but we learn a lot with them and we become better as a person. (F. 11)

[...] it is not easy for you to deal with different people, with children especially it is not easy, you have to seek courage, willpower, even strength every day to deal with them because each day they have a different need, they have their routine that we cannot change. (F.15)

The daily lives of family members of children with autism are even more affected due to the lack of access to information. The constant concern with the protection and safety of the children becomes part of the life of family members, representing a risk factor for psychological suffering.

[...] I have little knowledge about autism and I didn’t want to accept it, but thanks God I managed, I accept it better now. (F.12)

[...] I learned from the internet, researching files, studying, I had to look for information to understand how to deal with my son, because it is not easy! [...] so it’s very complicated for you today as a mother to deal with a child like that, if you don’t have help, if you don’t have guidance [...] I wanted the government to give more guidance to mothers, mainly, mothers who are not educated, those of low-income [...] we miss more lectures on autism in schools, the subject should be more disseminated (F. 16)

[...]I feel insecure due to the lack of knowledge I have about autism, I know very little, I have already watched reports and read something on the internet, but I still don't understand much about it. (F18)

This category exposes how parents deal with the growth and development of their children, highlighting the concern that they have in relation to the autonomy that these children will have when they come to be alone. It is worth mentioning the importance of support networks for comprehensive care, such as school inclusion and institutions that offer various activities and services to help in the child’s neuropsychomotor development. They contribute to the rewarding experience of the parents to see their child’s evolution. This is represented in the following lines:

[..] He started to relate well and was also studying at a regular school and at the age of four, he started to read a few words and speak (F. 03)

[..] We went after therapies and associations that could work with us and the school. He also started early in regular school, at the age of 4 and has continued since then [...] Communication is improving, as he is being followed-up by a speech therapist and has a younger sister who helps him a lot. (F. 04)

[..] I need to accompany him everywhere, at all times and at school, because he has a mild level, SEMEC [Municipal Secretariat of Education] doesn’t give me this companion, this is a big problem for me because I have to stay with him for he can’t defend himself. (F. 07)

[..] After the diagnosis, I looked for treatments so that he could have a normal life, socialize with other children; I took him to a psychologist, speech therapist, physical therapist, so that he could have quality of life. (F. 10)

[..] He had difficulty speaking; he started to speak a little after the therapy sessions when he was almost 4 years old. (F. 12)

[..] It is a great happiness for us, he taking the first step, walking, learning to speak, each new word he learns is new for us; true it is tiring, sometimes we think we won’t make it. (F. 14)