Thanks for getting back to us and letting us know are things are going !
Thanks very much. After a series of visits to doctors, we now have a diagnosis.. ASD. I am so relieved that I know what I am dealing with now and can give my son the support and understanding he needs.
I think you are also right to notice a connection between food. My son is autistic and I have a diagnosis of Fibromyalgia. I have been seeing a nutricianist for myself and she has recommended eating frequently, every 2 hours, and that I should remove all refined carbs (sugar, wheat etc), caffeine, alcohol, stimulants, sweetners from my diet. If the body is not able to control blood sugar there can be a number of hormones eg. adrenalene and noradrenelene which can be overproducted causing erratic blood sugar levels. As children with autism/ADHD etc also tend to have anxiety/stress level problems they can be secreting high levels or adrenalene which affects blood sugar levels too. I have noticed that although my son is quite slim he carries fat on his stomach, as I do. This again is an indication of high levels of stress hormones. So, yes you are right to keep food very regular and simple, no sugars etc, as that will help maintain mood/concentration levels.
Another thing I did was, when I had read a few books and spoken to a number of professionals, I drew up a priority list of things I thought my son was good at and bad at. So, I might join him in a group for something he is good at for self esteem, and I might entrol him on a trampoline class to help with sensory issues, taking turn, socialising, following verbal instructions, cognitive motor planning skills (you have to interpret what the instructor says into physical moves). These are all skills that can be improved with trampolinging and any improvement will translate into the classroom. My physiotherapist also advised lots of crawling. Get those fabric tubes and get him crawling through them, or make a soldier assult course and get him crawing under a duvet etc, because this all helps with brain development. Movement helps with the brains wiring especially the interaction and communication between left and right hemisphere.
Other physical stuff like swimming and horse riding can be good. Find out about groups that do cheaper horse riding for special needs children etc. Also remember you don't have to do them every week. You could do trampoling throughout the winter when its cold and wet outside and do horse riding once a fortnight in the summer. Just fit it to your budget.
The parent support group in my area use the gym of a local community college once a fortnight. We put out all the gym equipment, a full size trampoline, a big bouncy castle and the college provides a number of adults to staff the group. It is for 2 hours and costs a couple of quid per child. They can also have siblings and friends come to this club so siblings get to meet other children in a similar position to themselves and friends can come too. So it is good for socialising as well. The parents meet in another room and have tea/cake and chat and share information. If there is nothing like that in your area you might be in a position to get one started if you have the time or energy. Or you could at least pool some people together who would want to do this type of thing and then they can organise it. The sky is the limit really.
Another good tip is to always use their interests and obsessions to teach them things. If he loves thomas the tank engine use it to teach maths/reading/social skills etc. Don't try to put thomas away so that you can do maths homework. It just won't work. If I play a war game of soldiers with my son I can get him to count how many of my soldiers he has killed, how many soldiers he has left, how many more soldiers does he have than me etc. And he loves doing it. If I try to do maths homework I get a tantrum. Work with what they are good at because they have tons of attentiona and focus for the things they like.
I don't know what CAHMS is. I understand your concern that your son is not 'bad enough'. But if you consider my post above, and as you learn and delve more into what your son is experiencing, you will see that he does have alot of contend with, especially in a school learning environment. And if he is assessed and seen to have these needs then supports can be put in place eg. if he is unable to take in alot of auditory information (SALT should be able to assess this), then as he can read, he may need instructions to be printed out for him to read, rather than expecting him to be able to listen to what the teacher is saying. That is a relatively small adjustment that could make alot of different to your sons behaviour in the classroom.
He may have problems with handwriting, finishing work on time etc. He may need access to a laptop or computer software to help him complete work. These are all things he may need for the future. He is 5 now, and believe me, by the time you have asked for something eg. laptop, and it actually materialises can be months or years later.
My son will be moving from infant to junior school in September. I have managed to move him to another mainstream school that has experience and expertise in autism and has extra staff and supports. There are around 6 children per class on the spectrum. This type of school maybe available in your area and you may want to consider it when your child is getting nearer to that age, because they are expected to be much more independent and able in junior school.
Does your son have tantrums or get very upset or angry?
The more you post, the more he sounds like sensory issues are playing a big part in his difficulties afterall if you experience the same situation differently ie. one time it hurts you another time it doesn't, you are just going always try to avoid that situation just in case. And of course your son does not understand that the way he is experiencing things is different to you. I would begin explaining that to him eg. when something hurts him eg. washing/cutting hair/nails etc ask him 'does that hurt you' and if he replies yes, tell him that it doesn't hurt you and that maybe his fingers/hair feels things more than you. If you do this every time he over or under reacts he will begin to understand that he is feeling things differently, you can then move it onto the next step of getting him to explain to you what he is experiencing. My son who is 7 can now do that and it is unbelievably helpful eg. he tells me that when he gets overwhelmed by stimulus it is like drowning and he cannot control it. So when he appears to 'over react' he isn't really is he. He is reacting to what he is experiencing eg. drowning in unpleasant sensations and emotions and not being able to get them under control. Once you know that you will have more patience with them and you will give them more time to recover and you will work out strategies like 'needing some quiet time' to calm down after something has upset them.
Taking language literally is very common in autistic spectrum disorders. For example, my son was being naughty and my husband said 'do that one more time and see what happens'. So that is exactly what he did because he wanted to see what would happen. He got cuffed around the ear. But obviously I was annoyed at my husband for not seeing that he would take what he said literally and he didn't have the foresight to see that if he was being naughty and did it one more time that he might get into trouble. From that example you can see how these children can get into trouble at school. For example if a teacher asks sarcastically 'so you think you're smart do you?' they will probably reply 'yes'. This naievity means that their peer group can tease them and get them to do things that will get them into trouble. Anyway, i've wandered off topic again.
Another place to look at language problems is http://www. hyperlexia. org/sp1. html (take out the spaces. I put them there so it would print the webpage). It is very likely that your son has these type of semantic pragmatic problems.
If your son has Aspergers it is much harder to get supports for them because they are considered to be so much more able and usually can learn in mainstream schools ie. your son is reading. My son who is autistic is 7.5 years old and not reading. The difficulty is that although he is learning he is going to be struggling with the communication and social interaction side of school life. The argument that high functioning aspergers and autistic children should be taught mainstream doesn't really add up. They say it is good peer group modelling for them. But if they could learn from watching their peers then they wouldn't have the language/communication/social interaction problems that get them a diagnosis in the first place. So don't believe that if you are told it. I have also never come across an adult diagnosed as on the spectrum who every enjoyed being in mainstream school. For most it was a very difficult time for them.
My advice would be to read the DSM IV diagnostic criteria and start to write down examples of your son's behaviour that fits the criteria. Social communication problems you have already mentioned such as not knowing how to adjust his social interaction depending on whether it is his mother, friend, doctor, stranger. You have also noted attention and focus problems eg. unaware of his environment when he is thinking or engrossed in something. This could also be a sign of mono-processing from a sensory point of view ie. when focusing through one sense the other ones are effectively switched off to avoid unwanted incoming stimulous. But if your son is doing that (as my son does it), then how is he going to be able to learn in a busy classroom environment where the teacher is talking and writing and demonstrating things and children are talking and moving about the classroom. Your son may focus on what she is writing on the whiteboard for example and not even hear the verbal instructions she is giving out at the same time. Therefore he will not know what to do and will appear as if he is not co-operating when infact he hasn't been able to take in all that information at the same time and process it. He may also have problems with organising himself, sequencing tasks, understanding time etc which will affect him in class.
Then add onto that any sensory over/under sensitivities etc.
I would recommend you buy Olga Bogdashinas book and complete the questionnaire at the back. You can pass this onto any OT who works with your son. Olga is a reputable professional who has been invited to speak to professionals and parents in our city and whose questionnaire is used by our autism department for parents to complete.
Can you tell me if you are in the USA or UK so that I know what other information to give you.
But I would start by going to your GP and asking for a multi-disciplinary team assessment by Speech and Language Therapist, Educational Psychologist and Occupational Therapist and ask that they all have experience of diagnosising autism/aspergers. I would also ask through his school if they have access to an Autism Advisory Teacher that could come into school to assess your son.
I would also advise that you get in touch with a parents support group because you will get lots of information through them as to what is available in your area. It will also give you a change to meet other parents and children with the same diagnosis.
I would also advise you to get in touch with a parents advocacy service that can advise you about the education system regarding special educational needs for children.
I am based in the UK and we have just gone through the whole process of assessments to find out what supports my son needs in school and what type of school he needs to be in. I have received their final document which is basically having a laugh. They haven't even listened to the evidence provided by their own specialists as to the level of support or type of school my son needs. So I am now at the stage of paying for private assessments (Ed Psych, SALT, OT) and will be going to the educational tribunal.
I am not saying that that is what will happen to you. The level of support and the service you get differs greately from area to area. But my point is, that if you are aware of what you are entitled to it will give you more information that you can act on. Don't just be grateful for any little help they give you. Your son needs you to be strong for him and to find out what he is entitled to and to fight to make sure he gets it. Because at the end of the day, the more able and capable he is the more independent he will be in later life, which is what we are all looking for.
Thank you. Actually That is exactly what I want to hear.I have been researching Aspergers since posting this and so many of the symtoms fit him exactly. Although he is not a loner at school he cant read people very well, he goes from being overly affectionate, giving hugs and kisses to people he has never met before (like the doctor), to not acknowledging that people are there if he is thinking or doing something else. He cant understand that some games are not real, ( like you dont REALLY walk the plank and gets fed to the sharks!!) When his friends wanted to do this to me, he flew into a panic and got really upset. So many things, as I described above. Also, When he was very young he has a very high pain threshold but now he overreacts to anything like that because he seems to fear what might happen.He hates having his hair washed or anything on his face. He is always wiping his face when he eats. and doesnt like drinking out of a cup (although he will do it) without a straw so he doesnt get anything round his mouth. Because I have been giving him quite high doses of Omega 3 oil over the last few weeks, as I know this helps with brain function, his concentration has got better just this week, but I am concerned that if this continues in between these other symptoms, the school with not take me seriously. I have found a wonderful clinic that will ***** him but I have to go private. This is too much for me to afford. The gp says he can refer me to CAHMS but I am concerned they wont think it is bad enough to help. What are they like, does it take a long time to get anywhere. Any feedback gratefully recieved.
If you have a look on the autism forum you can click on the Health Page link which is on the top right hand corner of the forum page. I have posted the diagnostic criteria under DSM IV for autism and have asked parents to post examples of their child's behaviour that meets the criteria. You might find that helpful in seeing what behaviour the professionals would be looking for.
If your child had no speech delay or disorder but has problems processing language, following instructions, takes language literally etc then you might like to google DSM IV for Aspergers just to see what the difference is.
There can be some similar charteristics between autism and ADHD. Some children have traits of both, but not enough of any to get a diagnosis.
But as you and school are concerned I think a full evaluation through Health would be advisable. Ask that he is seen by a multi-disciplinary team that are experienced in childhood development and diagnosing children with ADHD and autism.
You also mention a number of sensory issues so I would advise you google the name Olga Bogdashina and read an article by her printed in Autism Today. She has published a number of books, but the one most relevant would be Sensory and Perceptual Differences in Autism and Aspergers. If the article sounds relevant then you could buy her book. At the back of the book is a caregivers questionnaire which you can complete the give you a sensory profile of your child. Sensory Integration problems can be a diagnosis in themselves, but can also accompany ADHD and Autism/Aspergers. The important thing to know about sensory difficulties is that the same level of incoming sensory stimulus can received at different levels, so the same stimulus will not necessarily get the same response from your child. So on one occasion he may cover his ears at a sound and at another time he might appear as if deaf. You also mention problems with taste, balance etc which are all senses.
The professional who deals with this is an Occupational Therapist and you need to be referred to one that has experience in childhood development and Autism/ADHD and Sensory Integration Disorder.
I know this is probably not what you want to hear, but he does sound very capable and is verbal and reading, so if he is on the spectrum he is going to be on the higher functioning end. If he has the right supports, approaches and strategies it will make his life alot easier.
Depending on how he progresses/develops he may cope in mainstream school. Or it might be beneficial for him to be in a school that is dedicated to children with Aspergers/High Functioning Autism. It really depends on how his anxiety/stress levels are and how he copes in mainstream school. The sensory environment in a dedicated school may mean his has less sensory stimulation which can only be benefical to him.
That sounds exactly like my son. We've been having problems with his attention at pre-school recently and every day when i collect him the teachers will take me aside and describe that - yet again, "he's not had a very good day today"
He gets very frustrated with things, if he cannot do what he wants (ie cut a line out precisely with scissors, or balance blocks without them falling) he will break out into an almighty strop, throwing himself on the floor and crying quite loudly. In situations with other children he will annoy them by touching their faces and legs etc while they are sitting down nicely - therefore he is unable to sit for a period of time without annoying someone!
When at home, he will run around silly, headbutting the chair and jumping and climbing everything. This, to me sounds just like ADHD, and believe me, i've researched this well - but i dont think he has this.
I've recently discovered that hes REALLY naughty when he has an empty tummy - if i provide a snack for his snack-time at pre-school, which he isnt too keen on and he doesnt eat, he will behave really badly..... i've researched into whether this is due to low blood sugar levels - but there arent a great deal of any useful websites out there on this subject.
My theory is that - for whatever reason, it takes the message from his tummy longer to reach his brain than other children to tell him that hes hungry, so therefore doesnt understand why he is being naughty until the message finally reaches his brain that he needs food and then eats.......... after he has eaten, hes like a little angel - talking nicely, sitting still and generally behaving well - until approximately one hour later, when i start to notice the symptoms again (he turns into his jekyl/hyde character again) and starts to do silly things..... so i feed him (a healthy snack always) and hes fine again.
Obviously, the pre-school cannot feed him every hour, so he behaves badly there. Does anyone else have this probelm, or can identify with any of this?????