In October 2012, I was at the speech therapist’s with “Gubby”. She had never met him before and classified him as autistic because he did not want to sort her cards in to two piles, clothes and vehicles. The psychologist we had to see in December 2012, said “He is not autistic”! He interacted with his dad the entire time, and she declared that an autistic child does not do that, nor seek another person’s attention, which he did the entire time with “mamma, look what we are doing! Daddy look at me know, look at what I am doing!”. In August 2013, we met with the speech therapist again, and he did not laugh as long as he should according to her, so he must be autistic. So she sent him to another psychologist, this time at BUP and not at the hospital, because she was determined to get the diagnosis that she wanted. I did not laugh at her at all, because you have to look really hard to find a more boring person, with no bedside manners at all when it concerns children. A stone-faced cold person! But off we went again, only a week after she sent the referral which really is a miracle in itself, because usually you have months and months to wait. But she is the head of the department and knew what strings to pull. She wanted results and yesterday! All they have done since September 2013, is to search for autism signs in “Gubby”, asking what we in journalism call, leading questions. They searched really hard for signs of it, and they found them. As Daniel said when I got home with the news, and which I had already thought myself, “If you search really hard, you will always find some mental illness in a person. Especially autism!”. That is how it is. Most of us will fit the criteria, and yet, we function, don’t we?
If we ignore the diagnosis, we get zero help. If we accept it, or pretend to accept it, I should say, I for one can get money from the state for loss of income. I obviously can never get out in to the work force with my three “brain-damaged” boys! He is entitled to a special speech therapist and psychologist at something called habilitation. We get trained during two days, but fat chance T.’s boss is going to allow him to be off work two days and what am I supposed to do with my boys? And exactly what am I supposed to learn? He is no problem what so ever. They talked about relief home, a home one sends the child to, in order so the family and parents can rest from the child. Rest from him? Why would I need that? He is an angel and no problem taking care of at all. The ones I need relief from, rest from, is my son with ADHD and the one that is going to be tested for ADHD and Autism. THEY are the ones driving me knackered, but no relief is offered when it comes to them! They who wear me out.
But, when he starts zero class, he will need the same sort of help he gets at the pre-school, and if he is going to get it according to the law, be entitled to it, he will have to have a paper which says he is autistic. Otherwise they will railroad us. Crass reality. As I said to them, I am not going to be the sort of parent that sticks my head in the sand like an ostrich and pretend the problems are not there. I will accept all the help I can get for my son. If they have wrongly diagnosed him, he will still be better off having received the help. All children should be entitled to get what is best for them. But they don’t in Sweden. The classes are too big and if you get behind, tough luck, if you do not reach the goals, tough luck. School is not for loosers. You have to be average, otherwise there is no room for you at the inn.
So what is autism then? According to the stupid pamphlet that the Special Ed teacher at BUP gave me, it is the following (translated by me and google translate):
Autism is a pervasive, congenital disability that often occur with other disabilities such as mental retardation, epilepsy, visual and hearing impairments. “Gubby” is not mentally retarded what so ever. He has more clever thoughts than his older brothers. He thinks deep thoughts. Nor does he have epilepsy or any problems with his eyes or hearing!
People with autism have difficulty processing information so that they have a full context of their experiences. He perfectly understands what is going on every time he is at the hospital with his kidney problem, he asks questions, same goes for when he went for a hearing test. And he knew exactly what he was going through at Legoland, understanding the queue system, all security, everything. He knows that we go to church on Sundays, what sort of clothes one wears then, what is expected. He knows how to pray and he listens and learns in his lessons. They also have a lack of ability to understand and empathize with other people’s thoughts and feelings. “Gubby” comforts the sad. He studies people’s faces to see how they are reacting to things. I sat and read a Winnie the Pooh book about feelings just Monday afternoon and he knew them all! He did not have words for feelings like disappointed and being content. But he described it to me, so there was no doubt that he had understood what the page was about. This leads to a variety of symptoms which are usually divided into three main groups:
People with autism have an impaired ability to understand eye contact, facial expressions, gestures and body language. Therefore it is difficult to develop a reciprocal social interaction with other people. Children with autism rarely show an interest in playing with other children on an equal level. The problem is a lack of ability to share enjoyment and interests with others. This really makes me mad since “Gubby” wants to share experiences with people. He walked up at Legoland and talked to other children his own age, about the fun they were going to have on the Safari ride. He wanted eye contact with “Boo” so they could laugh together. He held hands with him, talked about what they were experiencing with “Boo” and he hooked his arm in to his for safety. He is never as happy as when his siblings are coming home from school or it is time to fetch them, since he has someone funnier to interact with, than me. He completely livens up.
The speech often develops late, and sometimes not at all, in people with autism. For those who have a spoken language, it is significant that it is hard to maintain a conversation with them because they have a lack of understanding of how language is used in a social contexts. Language comprehension, especially the understanding of the language’s “spirit” may be deficient also in people who have a large vocabulary.
1) difficulty in initiating and maintaining a conversation “Gubby” initiates conversation all the time. With total strangers as well. He tries and he gets better and better as his vocabulary expands. And this is happening at a rapid rate just now. His language is exploding and he can say and do things that his two-year older brother can not. “Boo” can not say R while “Gubby” now rolls them like a genuine Scot rolling his Rs when he speaks in Brogue. And he is forming grammatically correct sentences in both Swedish and in English, which neither “Boo” or “Kitty” can do, who are 7 and 10.
2) stereotyped speech with many repetitions, or “own” words “Gubby does not repeat words and yes, he has two words of his own. He calls a snow-suit ‘Kastrull’ when it should be ‘Overall’ and he says ‘Mimmi’ to his soother, which in Swedish is ‘Napp’. But I did the same thing, most children do. It’s rather imaginative to come up with a new word for something, when one does not know what the correct word is or just have a general sense of what it is.
3) concrete and literal interpretation of the language
4) difficulty in adjusting the volume of their voice to different situations. He does not raise his voice and scream, like his brothers. He knows how to whisper in Church or at least keep his voice low. Like I said, he is an easy child to take care of. His brothers, they only have one volume setting and that is on scream volume for the most part.
Children with autism do not play spontaneous pretend games and role play like other children. They seem to rarely bother with toys or use them in a different way, eg by spinning the toy car instead of driving with it. “Gubby” pretends all the time. He loves films like ‘Mr. Bean’, ‘Night at the Museum’, and he acts out what he sees. He can go in to dialogue suddenly. Pretends people from the film are there with him. He ties himself, like ‘Larry’ gets tied by the miniatures in ‘Night at the Museum’, using the vacuum cleaner cord since he can not find anything else suitable. “Boo” and “Kitty” sit apathetic in front of the TV but “Gubby” answers questions when it is an interactive programs, he pays attention so that he later can sing a song or act out the story. And when he is bored with the film, he stands up and plays instead. He loves toys. And either he sits and admires them or make voices for them. He asks people to help him build the train tracks and when I could not do it last week, he resolutely sat down and built it himself and a very, very good one at that. He drives his cars!
Children as well as adults, may periodically become totally engulfed in specific interests, things, and activities. When Daniel heard this he said “I guess I am autistic then since I sit and read about the military all the time, and the Revolutionary war in America”. I agree. I read anything and everything about WWII. And now when I want to build a WWII dollhouse, I guess I am autistic because I read everything I can, to learn all details about what houses looked like back then. We are all autistic. Some are very routine-bound and reacts strongly to small changes, such as where to sit or what order to do different things. Many also sit and repeat stereotyped movement patterns. “Gubby” has never done anything of the sort. If he had, then I would have said autistic child years ago!