My J has been erm 'unusual' since he was 2 - or more noticably so, though the signs were there before.
The problems are obvious at school, where J is more stressed/ anxious - very very violent and oppositional/ controlling - lots of meltdowns. Also VERY VERY hyper and poor concentration. But those can also be hallmarks of poor diet or parenting, so I know that many parents in the playground steer clear because they assume that I must be the mother from hell, because J is so well known for his 'issues' and he doesn't fit in with the Rainman stereotype!
BUT BUT BUT, even though J was statemented from the age of 3, it was initially for unspecified EBD and then for ADHD as well. So the autism itself wasn't obvious, or, rather, was masked by the ADHD and good verbal skills.
At home, is is often unnoticable for a visitor, especially when he is relaxed. His social worker and outreach worker both described him as quirky when they first met him, but were surprised by how autistically he scored on the ADOS test Nearly full marks). His psych says the surface sociability and good intelligence/ language skills are what mask it BUT that his social defecits are severe - hence the full time support at school and the friendship problems.
My (less close - the really close ones have seen J in full meltdown) friends will sometimes say 'but all children...' and 'well, all boys do that' and I suppose the point is that MOST children will not do so many odd things for such a high proportion of the time! Rainman stereotype again - ohhh but he's so cute and funny.
He is. And sometimes, he appears to be like any other 6 year old. Not often, but sometimes.
Even my family, who know him well, took a long time to be convinced by the autism (though we'd all the guessed the ADHD bit!). I took the ADOS report and the DSM-IV criteria for them and highlighted why the psychiatrists were saying autism. We got there.
At the end of the daym you know him best. You know that assessment is the way to find the answers, so don't worry if not everyone is convinced yet. An official dx report may help some accept it. As for the others - well, as long as school/ nursery accept it, don't worry if others take a while.
In answer to your initial question, I believe that it is perfectly possible for autism to go unnoticed, certainly by laypeople or acquaintances.
J was seen by THREE educational psychologists, a paediatrician and a psychiatrist (an expert in autism) when being assessed for his statement and for ADHD. Not ONE of these expert professionals spotted the autism or even mentioned the possibility. It took a very observant psychistrist (a new one) to mention the possibility to me. So we saw 5 people who should have spotted it but didn't! So of course people will find it hard to spot high functioning autism or AS.
Below is the copy of what I gave to my family and friends who questioned or were confused by the dx because 'J isn't quiet and aloof and cut off from the world' . Hope it's useful:
Autism and what it means for xx.
The criteria below is from The Diagnostic and Statistical Manual of Mental Disorders (DSM)which is a handbook for mental health professionals that lists different categories of mental disorders and the criteria for diagnosing them, according to the publishing organization the American Psychiatric Association. It is used worldwide by clinicians and researchers as well as insurance companies, pharmaceutical companies and policy makers. The writing in brackets describes why the two psychiatrists who have assessed and diagnosed xx have concluded that he has autism. Most of the information they used came from the ADOS test (Autistic Diagnostic Observation Schedule) that is used worldwide to test for autism. It involved an hour where the psychiatrist talked to xx and played games with him to look at his behaviour, social skills and conversation skills. The test is scored out of 22 and the cut off for mild autism is 7. The cut off for autism is 12. xx scored 20, putting him well into the autistic range, and they explained their reasoning with reference to the things described below. Some information that they used came from discussion with me about his early years and development.
Criteria for a diagnosis of autism:
?I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)
(A) qualitative impairment in social interaction, as manifested by at least two of the following:
- marked impairments in the use of multiple nonverbal behaviours such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(xx does make eye-contact, but it is often only fleeting and is always on his own terms ? he often will not look at a person if they are speaking to him, and will only sometimes look at someone when he speaks to them. His facial expressions are often over-exaggerated or inappropriate e.g. smiling when someone is hurt or looking over-the-top when cross)
- failure to develop peer relationships appropriate to developmental level
(xx has always had trouble with children his own age, finding it very difficult to play with them rather than bossing them about. He finds it very hard to make friends as he just wants to control them. He still finds it impossible to share with others.)
- a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
(I don?t think he really meets this criteria, but the psychiatrist who did the ADOS test said that he didn?t share enjoyment when playing games with her, but just seemed rather flat about playing the game.)
- lack of social or emotional reciprocity
(This is about ?give and take? with another person, so being able to compromise and react to other people?s emotions properly. It was felt that xx is very often only interested in his own needs and wants and so fails to react to others? needs. It was also noted that xx finds it hard to read other people?s emotions unless they are doing something obvious like crying or shouting or laughing. Therefore he can?t tell when he is boring people or annoying people, and so will keep doing what he wants e.g. talking about one topic for far too long, or keep taking their belongings away, as he is focused on himself and not other people.)
(B) qualitative impairments in communication as manifested by at least one of the following:
- delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(this doesn?t really apply to xx, although people found it hard to understand his pronunciation when he was younger)
- in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(xx is able to start a conversation with others, but talks at rather than with people, about topics that he wants to talk about. He does not pick up on normal conversational rules e.g. in the ADOS test, the psychiatrist said to him ?I went on holiday last summer?. She would have expected him to say ?where did you go?? and ask questions about it, but xx just said ?Oh. I go on holiday? and did not ask her questions or develop the conversation further. )
- stereotyped and repetitive use of language or idiosyncratic language
(It was noted that xx?s language and vocabulary are excellent, but are apparently unusual as he uses very adult words and phrases, a lot of which are copied from parents, teachers, TV, films or books. This is called delayed echolalia (or echoing ? repeating back things he has heard). He will also echo adults when he likes the sound of what they have said. He also uses made-up words sometimes and doesn?t always understand the rules of language e.g. he will talk in a teacher voice to children at school to tell them off. He will also find it hard to instinctively know the right thing to say in certain situations and so has to learn rules/ manners by heart, like learning times tables, rather than knowing what to say. E.g. in the ADOS test, he banged the table against the psychiatrist?s leg by accident. She said that it hurt; he said ?thank you?, when what he meant was ?sorry?. He knew that he was supposed to say something, but forgot what.
- lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(xx would play with certain toys when he was little, but usually fixated on one or two toys and would only play with them. He has never really made up games or stories; most of his play has been copying e.g. cleaning/ cooking. At nursery, his behaviour was commented on as he spent most of his time moving furniture around and didn?t really want to play with anything)
(C) restricted repetitive and stereotyped patterns of behaviour, interests and activities, as manifested by at least two of the following:
- encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(this is the only category that I initially thought that xx had problems with. This bit related to the obsessions that he has had ever since he could crawl ? with plug sockets, light switches and buttons. He will play with these wherever we are ? at Sainsbury?s, he even tries to go behind the tills to play with the buttons. He also has obsessions with watching the same musicals over and over again e.g. Annie, Oliver and with CDs, at the moment, as well as planning for his birthday party, which was all he talked about for most of the month of January! We say ?obsession? because often they are all he can think or talk about.)
- apparently inflexible adherence to specific, non-functional routines or rituals
(This is about only wanting to do things in a certain way. In xx?s case, this way is his way! For example, he only likes to take the same routes when we drive somewhere, and will have set routines that he will get upset about if they are not followed. E.g. if we don?t buy his magazine on Tuesdays, he can get very upset. If someone moves his book at school, he will have a tantrum. He will only sit in a certain seat on the sofa. He gets cross if he is not warned about something new or different happening at school. Whenever we go to the hospital, he will move furniture round the room, turn the lights on and off and will open the window. Whenever we go to my parents?, he wants to move the furniture and do a ?show?. He gets very upset if we try to change these routines.)
- stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)
(He doesn?t do this now, but used to twist his hands as a baby.)
- persistent preoccupation with parts of objects
(This relates back again to the obsession with buttons and switches.)
(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(A) social interaction
(B) language as used in social communication
(C) symbolic or imaginative play
(A and C are the only ones that really apply before 3 years.)
The DSM further states that: ?Individuals with Autistic Disorder may have a range of behavioral symptoms, including hyperactivity, short attention span, impassivity, aggressiveness, self-injurious behaviors, and, particularly in young children, temper tantrums. They may want to be in control of other people to reduce the anxiety that they feel about a world which seems strange to them.?
(xx has displayed all of these symptoms for a very long time, and because these are not accounted for by poor parenting, diet or learning difficulties, it was decided that these were part of his autistic symptoms.)