Diagnosis Autism: Beware, we might all be labeled with it soon!!!

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?

Before we headed to BUP yesterday, T.’s boss told him to be aware that all is not always what it seems. Her best friend had brought her son to BUP three years ago, and the son got the diagnosis of ADHD. Now three years later, the parents asked for them to re-test him because they did not believe for a second that he has ADHD. Their son today have a new diagnosis of Autism. I told T. that in my view, psychology is like two people standing looking at a painting. Take a painting of Salvador Dali, for example! T. and I actually went to the Peggy Guggenheim museum in Venice, a couple of years ago. He begged for me to pay entrance for him eventhough I told him that it was not his sort of paintings. Sure enough, he walked around complaining how ugly, how sick the paintings were. I can’t say I love ALL modern art, but I can see interesting aspects in some of the art and enjoyed looking at it very much, after watching renaissance paintings for over a week. It was nice with something totally different for one day! While he thought the paintings were ridiculous, I could see other things in them. And that is how it is, one art critic will read things in to a painting while another will think it is garbage and that it looks like a chimpanzee has painted it! Psychology is not a fool-proof science! It is very much interpretation and I brought this fact up at BUP. When I took a personality test in the US, since T. needed a test person when he was studying educational psychology, I found it interesting to find out that I am an introverted introvert, with the same personality as Mahatma Gandhi and Eleanor Roosevelt. But honestly, how trustworthy are those tests when you sit and look at four alternatives to a question and you don’t really fit in to either of the four? When you have to choose the alternative closest to the truth.

In my son’s case, the psychologist asked T. and me questions that we often could not answer because we had not paid attention to anything out of the ordinary. He gave our son an IQ test, that “Gubby” wasn’t really interested in taking. The Special Ed teacher went out to the pre-school once and observed him for one hour there and then she filmed a play session at BUP (ADOS test) where “Gubby” was supposed to play the games that the psychologist decided. All of this is described in previous posts. In my opinion, they have seen 1% of what my son is like! But they are determined that they have seen enough. Hmmm! Think about it and look at the illustrations at the top of the post!

I went in and thought he might end up in the autism spectra. An umbrella diagnosis for practically everything that is different from the average child. Because that is what he is, a little bit different in that he is developing SOME skills a little bit later than his peers. That is all. So I could not believe it when we sit down and they just say: We have decided that he has autism! When I told the head at the pre-school she just stared at me and did not believe it either. BUP said that we can ignore the diagnosis and do nothing from now on. BUT it is clear to me, that he will need extra help, since he already does get extra help at the pre-school. Montessori leaves the child to itself and the teacher only observes. They have been forbidden to do that with him. With him they have to sit down and make conversation and look him in the eye. And it works! With him, they have to help him get contact with other children. The other children chose to  ignore him from moment one, so the personnel take him out with ONE child, in to the garden, so that those two can play. If there is a third child, the two of them will go off and ignore “Gubby”. This scheme has worked as well. He loves to play football among other things and land hockey.

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:

1) Limitation in the ability to interact in reciprocal social “games” (in a way we all do play games I suppose?)

2) Limitation in the ability to have mutual communication

3) Limitation of behavior, interests and imagination

Many also have a different way of perceiving and responding to sensory input such as sound, light, smells and touch. “Gubby” has no difficulties with any of these.

The degree of autism can vary and people with the disability have different needs for help and support. To be diagnosed with autism the child should show behavioral symptoms in all three areas, before the age of three. There was nothing wrong with him before the age of three, nothing except his speech being late! But he was not silent! He did use words!

Social interaction
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. 

Communication
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. 

It is common that they have a 
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. 

Behavior
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!

Habilitation

Early diagnosis and good information to all concerned is essential. Then, education, environment and support can be tailored to the specific needs of a person with autism. With early, well planned and adjusted schooling, they can learn to better understand their environment and the people in it and to make themselves understood. Many are much helped by communication support such as pictures or written text. Most people can learn how to dress, eat, take care of their hygiene and simple housework. Learn how to dress? He learned how to dress a year ago at least or was it two. He has known for so long that I can not remember. He has never ever put on his underwear backwards, nor his shirts or trousers and more so, never his shoes or boots. ALL his siblings have been walking around with a left shoe on the right foot and vice versa, not feeling the difference nor seeing it. He feels it and sees it. He has eaten by himself since he was at least 18 months and this late date, because he was lazy and did not want to eat anything unless we spoon fed him. He can shower himself and washes his hair, under his feet, his bottom and well, everywhere. As for housework, he is sometimes the only one helping me clean and put away things. He comes to help when I say for everyone to help me clean. The others totally ignore me and he sees how upset I get at this, so he comes to help. Send him to a relief home right? The only one who cares!

With the right support, many take in school knowledge and some can handle higher studies. As adults, some operate relatively independently although they usually retain some of their characteristics. Most do, however, need extensive help and support. The psychologist mentioned finally that he has dealt with so many children but “Gubby” ‘will always stand out since he is so adorable, likeable, clever and happy. He is so loveable and conveys what he wants to say, even if he does not have the proper words for it. F. said he will never forget when “Gubby” came in with his hair standing up, having sweated in his beanie, saying happily to F. “I’m a hedgehog!” In some areas he has no problems what so ever. The only doors closed to him would be the police force and the military.’ 

It doesn’t change a thing! When I woke up this morning and heard him breathing deeply beside me, I realised that I couldn’t care less what they said to me yesterday. I don’t believe the diagnosis is correct, because they never got to see HIM the way he really is. Nothing has changed in my book. He is the same person that I woke up beside yesterday morning! When it dawned on me, that I had forgot to return T.’s travel card last night, after a “shopping spree” (= 8 pieces of felt fabric to fix a silent book for “Gubby” that I made for Johannes but which never interested him or any of the other children, miniature clothes pins for said book, three shirts for “Kitty”, 4 socks for me and a sport bra) in town yesterday afternoon, I crawled out of bed to run over to the bus station or at least meet him half way. “Gubby” woke up, and wanted to come with me. I told him he could not because I would have to walk too fast for him and that I would be back shortly. I told him that he should go back to bed. But he said “I’ll just go up to “Kitty”. I drew a sigh of relief. When I got back home from my morning walk in just fleece dress, duffel jacket and unlaced boots, he came down and we went back in and laid down again. According to the info above, he should have got hysterical, not been able to cope and banged his head on the wall, “Dobby” fashion (Harry Potter 2). Not a behaviour I have ever noticed at all. He is a level-headed child that come up with solutions! What a terrible brochure to hand out to people! What the illustration says here on the right, is what my son is like. I should buy him a T-shirt like this! Think I got the illustration from a T-shirt place actually. Must check that up. He could wear it to habilitation when he is called there.