Carolann spends a lot of time talking to teachers, classroom assistants, employers, health professionals, social services, in fact to anyone who needs to know how to deal with a child or adult with Asperger Syndrome. People with Asperger Syndrome have a wide range of problems from physical health problems to anger management problems. Some problems seem pretty intractable. We receive many phone calls each week, some of which concern the daily problems of life that is the lot of the person with Asperger Syndrome and his or her family. This page will look at some typical problems and suggest some solutions. If you can offer problems or solutions, please email us.
Getting a Diagnosis in Children
Some of our members are lucky, in that they get a diagnosis when their child is at nursery school. They probably feel anything but lucky as they have to come to terms with the idea that their child now has a label and that there may be trouble ahead. However, an early diagnosis is crucial in getting help. Those whose diagnosis comes later may have endured serious problems due to lack of understanding at home and at school. These problems, such as bullying, can grind away at a child’s self-esteem which, in turn, has a negative effect on his or her parents and siblings.
There are some genuine reasons why diagnosticians have difficulties recognising Asperger Syndrome. While there are psychometric (paper and pencil) tests that demonstrate difficulties with understanding and perception, these are not sufficient for diagnosis. The child’s development must also be studied. Since this is a developmental disorder, the child with Asperger Syndrome will definitely show abnormalities in his/her development. So, if you are a parent accompanying your child to a diagnosis session, you must be careful to give an accurate account and not be tempted to say what a wonderful baby he was, giving you no trouble! The more you come across as a coping and confident mother, the more inclined the diagnostician may be to decide the problem is one of general developmental delay.
The diagnostician will be looking at the child’s social development and may ask questions to do with how responsive he was as a baby (did he point out objects of interest) and how he played (did he do pretend play, did he understand that other people have feelings?) The child’s language development will also be examined. Was he slow to talk, did he engage in conversational exchange, did he learn his language through reading?
Since this is a syndrome, different children are affected to different degrees. For this reason, many different health specialists may be involved in the initial assessment of autism, from health visitors and speech and language therapists to GPs, child psychiatrists and occupational therapists. Some families pass through all these specialisms and more before reaching the diagnosis. Sometimes the diagnosis is not clear or there may be several competing diagnoses such as ADHD, social anxiety disorder or developmental coordination disorder. Usually by the age of seven the lack of social competence is more apparent and the diagnosis more straightforward.
The diagnostician is looking for distinct evidence, for example behaviours that would be abnormal in any child (flapping, stimming, lack of eye contact). Please note, many children with Asperger Syndrome do not exhibit these behaviours. He will also be looking for behaviours that are inappropriate for the child’s age. For instance, all babies go through a brief stage of staring at their hands. If they are still doing this as toddlers, it is abnormal behaviour. In many children with Asperger Syndrome, such signs of their disability appear more marked at particular ages. Many parents of children who have Asperger Syndrome recognise their child’s ‘autistic’ behaviours and body language as an early and useful indication of stress for a child who may be unable to articulate his problem through speech.
Thus, diagnosis depends on taking a full developmental history of the child as well as testing him or her with formal and informal procedures. It is really important that he or she is assessed in different situations, for instance at school and at home, in a one-to-one situation and amongst his peers. Often he or she will be able to manage one of these situations better than another, to the extent that the problems may be made light of by the observer. If you, as a parent, feel your child’s (lack of) diagnosis is down to the diagnostician’s inadequate understanding of the necessary steps outlined here, you should ask for a second opinion and demand an expert who understands Asperger Syndrome.
Getting a Diagnosis in Adults
NHS diagnostic services for adults are very patchy in Essex, and difficult to obtain. Please contact Carolann for updates because the Adult Autism Strategy is making it mandatory that a diagnostic pathway should be in place in the very near future. There are also private diagnostic options which Carolann can tell you about.
Most parents have a clear idea of what constitutes a balanced diet even if they find it difficult always to obey the rules themselves. Most children go through phases when they resist the balanced diet, refusing to eat certain ‘healthy’ foods such as fruit and vegetables or eating too much ‘junk’ or snack food. The usual advice is as follows – ‘no-one ever died of eating jam sandwiches every day’ or ‘encourage the child to eat just a little of what he dislikes, then ‘reward’ them with something he likes’.
But children with Asperger Syndrome need more careful consideration when eating problems arise, because many may suffer from gluten and dairy intolerance. Parents also list the following problems:
- S/he will not eat in the same room as a bowl of fruit
- It has to be fish and chips every Monday without fail
- S/he has to eat sitting at a coffee table and may choose not to join the family for meals
- S/he is not allowed enough time to finish his/her meal at school so they don’t eat enough
- S/he gets into trouble for being messy so, refuses to eat at all at school
- S/he eats a whole chocolate cake almost every day
These rigid ideas about food and eating worry parents, but the more they try logical argument the more stubborn the child with Asperger Syndrome becomes. What can be done to break the pattern?
First of all, check what they eating over the course of a few days. Although their diet may be unconventional, it may be quite well balanced. For instance, even if they are not eating fruit and vegetables they may still be eating sufficient minerals, vitamins and roughage via brown bread and dairy produce (where this is tolerated). If you are still worried the next step is to try to understand why the child behaves as s/he does and then work out a strategy to adapt the quality and quantity of food intake.
For instance, children with Asperger Syndrome have poor hand/eye co-ordination (Dyspraxia) so eating ‘nicely’ is difficult for them and frustrating. Don’t insist too early on correct cutlery, don’t fuss about spillages. Use the messiness as an opportunity to show how such problems can be overcome (using a spoon, spreading papers under their chair, not providing food he finds difficult to manipulate). Once they realise something can be done their self-esteem rises.
Children with Asperger Syndrome have senses which are finely tuned – their sense of smell is particularly acute. Their dislike for a certain food may be as much to do with its smell as its texture or the way it looks. As one member said “I once mistakenly told my son that a restaurant dish was noodles when it was actually cabbage. I discovered my mistake with the first mouthful but did not let on while he ate it with relish. Some weeks later I admitted my mistake, he saw the funny side; I learned to cook cabbage in the German way and he agreed to eat it!”
Some children with Asperger Syndrome eat painfully slowly, partly because of the co-ordination problem and partly because they have difficulty focusing on one task alone. Eating in a group may be difficult for them because they get distracted or because they hate being last (again). So provide a stress-free environment for their meals and allow them to return to their plate even though the other children have finished.
Sometimes you can turn a bad experience around by appealing to logic. For instance, a bout of constipation might be used as an opportunity to introduce All Bran (dependant on intolerance) or larger vegetable portions as a remedy. Or you might discuss in advance how you would deal with the Monday night fish & chips routine if there was a power cut. Once he’s agreed that it might just be possible to substitute another dish, you are some way to testing it out! Whatever you do, try not to make food and meals a battleground. You will not win this battle and you may start your child on some unhealthy attitudes to food and eating in the process. The aim of all this is to encourage him or her to enjoy eating! It’s one of the pleasures of life and people with Asperger Syndrome need to experience such pleasures.