The Quality of Autism Spectrum Disorder Diagnosis: Families’ Views
1.1. Waiting for the Diagnosis
1.2. Diagnosis Verification
2. Materials and Methods
2.1. Context Description
2.2. Sample Description
2.5. Data Analysis
3.1. Quantitative Results
3.2. Qualitative Results
3.2.1. Families’ Experiences during the Pre-Diagnosis Stage
He was a lazy kid who slept a lot; he did better with the feeding bottle and, when he was awake, he laughed all the time and for whatever reason. He seemed to be completely normal until he was 2 years old. He said ‘mamá [mum],’ ‘tete’ [brother], ‘coche’ [car], ‘agua’ [water], ‘pan’ [bread] and so on, and then shortly after his second birthday, he stopped. He unlearnt what he had already learnt, it was as if he had forgotten it. It was then that I started to take action (Mother 3).
Neither pediatricians nor nurses detected any symptoms, it was only me who realized that there was something happening, and even my family told me there was nothing wrong with the child (Mother 2).
Being told by everyone that you see things that are not there is a real torture (Mother 4).
Besides, for a long time I had to put up with comments such as “the problem is that you don’t know how to raise your child” and others that make you feel that you are not a good mother and that it is your fault (Mother 1).
The diagnosis is a huge blow, but it is also a relief because then you finally get to know what is happening to your child. The months when you don’t know are the worst part (Mother 1).
The waiting time for diagnosis and treatment is appalling. Families go through a lot of stress and anxiety until they are finally seen (Mother 5).
There was a long time from when we first mentioned it until we were heard and referred to specialists (Mother 1).
There is a total lack of coordination between pediatricians, psychologists, and neuro-pediatricians. Each practitioner tries to solve the situation differently, which confuses parents even more (Mother 4).
It is very important to train pediatricians, family doctors, and health practitioners on how to treat children with ASD, since these professionals most often don’t know how to take the right course of action during consults (Mother 3).
The neuro-pediatrician confirmed the pediatrician’s suspicion and referred me to a non-profit association for diagnosis. Thanks to the orthopedic surgeon, who suggested an early care center that we could visit, we had a diagnosis and better care than that received from the neuro-pediatrician, who simply told us there was nothing else he could do (Mother 1).
My son was diagnosed privately, it cost me 400 euros; maybe that was why everything went faster and the psychologists who worked with him made greater efforts (Mother 2).
We obtained the diagnosis because we went to a specialist private practice after seeing that neither the school’s psychologist nor the neuro-pediatrician were able to give us any support, information or guidance, or an explanation about the disorder; nothing at all. They were poor professionals with zero empathy. The truth is that we have received everything from the specialist practice that we took our champ to (Mother 5).
3.2.2. Families’ Experiences in Relation to the Communication of the Diagnosis
He asked me to sit down and then straight away told me that they believed the problem was that my son had autism. And from then on, you don’t understand anything anymore, you just see Rain Man. It just threw me, this labelling stuff. Right after that, he said to me that my son would never know how to use a mobile, that he would be unable to speak, that he would not hug me or kiss me; and warned me to watch out, because 60% of couples who have children with autism end up separating; that he had plenty of books and information he could lend me, and so on and so forth. And at that moment I only wanted to go home, to run away from there. I found it hard to get into my car and drive home (Mother 3).
I felt there was a total lack of sensitivity. I wished they had told me that I should have gone with my husband or someone else. I disliked the way they conveyed the news to me. Just imagine, my husband phoned me, and I couldn’t even speak and explain to him what had happened; I just couldn’t do it (Mother 4).
Luckily, we were advised to see a psychologist who not only told us about the first steps to be taken and the places we needed to go to, but also spent a whole month observing my son and explaining to us what he should be able to do but couldn’t do (Mother 2).
Alongside the psychologist’s efforts and support, we were helped by an amazing social worker who, in spite of the initial uncertainty and shock, managed to guide us, told us which benefits to apply for, where to go and so on. She was extremely important at that moment (Mother 1).
The educational psychologist referred me to an association that did really good work, but I couldn’t bring myself to call them. I preferred to digest it first and, the truth is I found it very difficult. At that time, I didn’t know how to explain to people what was going on with my son. It is true that my parents and my parents-in-law knew where I was going and what for, but I felt incapable of telling other people (Mother 3).
I could hardly sleep more than one hour at night and took medications for months. At that time, you can’t understand what you have done for the world to treat you —and especially your child— like that (Mother 2).
3.2.3. Families’ Experiences during the Post-Diagnosis Stage
The first two years were very hard for the two of us as a couple, an abyss opened up between us. At first, we disappeared as a couple, we saw each other as strangers and each of us ruminated over the situation on our own. I had never argued with my husband until then and, at that time, we began to argue about everything. With the passing of time, we backed each other up and became close again; we stopped arguing, as we realized that we had a common goal, our son. You need to be ok so that your child can be ok too (Mother 5).
First, you must accept it yourself, and that is something you never do. Whoever says they do is lying, I think. You initially ask yourself, “why me?”, and eventually, you wonder, “why my son?” “What have we all done to deserve this?” You start to look for causes, whether it was vaccines, pollution, too little or too much weight, mercury, white fish, cement and in the end, as I always say, it’s your lot in life, it is down to your genes (Mother 3).
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|1. The physician informed me of the diagnosis in a cold and unempathetic way.||29.4||14.7||23.5||17.6||14.7||2.74||1.442|
|2. The physician informed me of the diagnosis in a sensitive way and considered my emotions.||23.5||8.8||26.5||17.6||23.5||3.09||1.485|
|3. I was hastily informed of the diagnosis and had little time to ask questions.||38.2||11.8||23.5||11.8||14.7||2.53||1.482|
|4. The physician gave me time to ask any questions that I had.||8.8||17.6||17.6||20.6||35.3||3.56||1.375|
|5. After communicating the diagnosis, the meeting ended without any further guidance.||41.2||20.6||20.6||5.9||11.8||2.26||1.377|
|6. After communicating the diagnosis, positive and hopeful messages were provided.||20.6||8.8||32.4||14.7||23.5||3.12||1.431|
|7. After communicating the diagnosis, I was given advice on possible support measures and resources.||14.7||8.8||23.5||29.4||23.5||3.38||1.349|
|1. Reinforce the training of the physicians involved.||0.0||0.0||5.9||11.8||82.4||4.76||0.554|
|2. Shorten the average time elapsed between the identification of symptoms and the final diagnosis.||0.0||0.0||8.8||11.8||79.4||4.71||0.629|
|3. Increase emotional support throughout the process.||0.0||0.0||5.9||11.8||82.4||4.76||0.554|
|4. Improve the actual communication of the diagnosis.||0.0||0.0||2.9||17.6||79.4||4.76||0.496|
|5. Provide more information and guidance after the diagnosis.||0.0||0.0||0.0||5.9||94.1||4.94||0.239|
|6. Strengthen emotional support after the diagnosis.||0.0||0.0||5.9||8.8||85.3||4.79||0.538|
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Roig-Vila, R.; Urrea-Solano, M.; Gavilán-Martín, D. The Quality of Autism Spectrum Disorder Diagnosis: Families’ Views. Educ. Sci. 2020, 10, 256. https://doi.org/10.3390/educsci10090256
Roig-Vila R, Urrea-Solano M, Gavilán-Martín D. The Quality of Autism Spectrum Disorder Diagnosis: Families’ Views. Education Sciences. 2020; 10(9):256. https://doi.org/10.3390/educsci10090256Chicago/Turabian Style
Roig-Vila, Rosabel, Mayra Urrea-Solano, and Diego Gavilán-Martín. 2020. "The Quality of Autism Spectrum Disorder Diagnosis: Families’ Views" Education Sciences 10, no. 9: 256. https://doi.org/10.3390/educsci10090256