Please can you help. I have a 3.5 yr old boy who is causing concern. Since he was born there were flags raised to a number of issues i.e. he was a very quite BABY he was about 3/4 months old before we heard a proper holler. When he was on the floor he sat WITH toys but didnt explore them like normal kids did. He didnt walk till he was over 2yrs old, we put this down to the fact he was with a childminder who, as it transpired, left him in his buggy for long periods of the day. His speech can sometimes be a bit jarbled as in he will say "theres a bus" and daddy was in the aeroplane with the dinosaur????? although this is subsiding a lot. He is now in Pre-school and with a new Childminder whom he loves but she is flagging his behaviour, she finds him difficult and no matter what angle she seems to come at with him it doesnt seem to work. His Pre-school teacher pulled me aside to basically flag the same thing. He is not grasping what the other kids are grasping, he is not interacting with the other children AT ALL. he spends large amounts of his time whining when he cant get his way but she is unable to reason or compromise with him. I am worried that there may be a problem and dont know where to go. I have been in contact with the District Nurse who came on Monday and did basically a Developmental check and he has an appointment with the Area Medical Officer in March but I really need to identify it there is a problem so that I can help him and his care givers. Please can you advise in any way.
It might be worth having him checked to make sure he isn't on the autistic spectrum. He is verbal, which is good, but a Speech and Language Therapist should assess his speech as well as his social interaction skills.
You say he won't join in or conform to nursery activities. That maybe because he just wants to do what he is interested in (which is autistic behaviour). My son was the same at nursery. Can your son share toys and take turns with other children. Does he play with toys in the way they were intended or does he play with parts of toys. Does he spin or flap. Does he use language to chat, or does he only use it to get his needs met ie. to ask for a drink or say he is hungry. Do you every talk to him and he appears not to understand what you say. Does he ever repeat things you have said to him back to you or repeat things he has seen/heard on TV/DVDs?
Does he get upset with changes or transitions. Does he need to keep to a routine.
Does he have any repetitive behaviours?
Does he have any sensory issues eg. not liking hair being washed/brushed/cut or nails cut. Is he okay with clothing, smells and food. Is his balance and co-ordination okay. Does he ever appear deaf or appear not to feel pain?
Thanks for the reply I have to say reading through your post yes is the answer to a lot of what you have listed. to respond, no sharing is a no no at the moment but it is improving and taking turns is hard work for him to comply with but again is improving. in relation to playing with toys he mainly plays with his cars. He likes the movement of the wheels and can notice if the wheels do not move in unison, you know the way you have cheap cars where the bar is thin the wheels move up and down as well as around and he will keep telling you that it is broken. he doesnt spin or flap. He does chat, actually he yaps all the time. Yes to the question of do you talk and he appears not to understand a lot of the time he will do that and repeat back what he last said to you as opposed to what you asked him. he doesnt like change and is very particular about his clothing as in if there is a string hanging off anything you have to cut it off, the seam on his socks has to go across his toes. his coat must be zipped up or buttons closed. His balance is not great he is very cautious when he moves but coordination wise he's not bad. His hearing seems fine and yes he does feel pain. based on this what do you think???
I think you should go to your child's paediatrician and say that you are concerned about his communication and social interaction skills. Mention being on the autistic spectrum and say that you want professionals experienced in diagnosising autistic spectrum disorders to assess him. The first professional will be a speech and language therapist. They will assess his expressive and receptive speech. Sometimes there is a huge difference. A child maybe talking and appear to have typical communication skills, but their difficulty is with receptive speech ie. understanding what people are saying to them. These children are sometimes echolalia (they repeat what is said to them or things they have heard on TV or DVDs). Sometimes they give totally unrelated answers to questions you ask them. Sometimes they just don't respond to what you have asked them to do.
If he is on the spectrum he is at the higher functioning end because he is speaking. But he may need alot of speech therapy and by the time he is going to nursery/school he may need alot of structure and visual supports such as a visual schedule etc.
An experienced SALT should be able to tell you whether a child looks like getting a diagnosis of being on the spectrum. She should also assess for Semantic Pragmatic Speech Disorder. I don't know if he is too young to assess for that yet, but many children at the higher functioning end of the spectrum have this. Google it to see what it is. Also google Executive Function Disorder as he may shows signs of that.
A need for things to be perfect visually can be typical of being on the spectrum. My son will notice the most minute difference in things and things have to be just so. He too wraps himself up and his socks, shoes, coat have to be on and done up in a precise way. The seams on the socks may be down to a tactile sensory thing. What is he like with having his hair brushed, cut or nails trimmed?
An Occupational Therapist should assess his balance and co-ordination and you can google Sensory Integration Disorder to see what it is and see if that sounds relevant. Is he okay with smells, taste and textures of food?
You say he talks all the time. But is it a two way conversation or is he talking at you. My son (who is 7) talks to me, but how he does it is different to other kids. He isn't necessarily watching for my response to what he is saying or even looking to see if I am interested. He is telling me about something he is interested in or that he found funny. He doesn't really need or want me to contribute to the conversation. It is rather like giving a statement than two way communication. Obviously your child is alot younger. But what does he way to you?
Sharing and taking turns is difficult for those on the spectrum, but they can learn this skill. My son couldn't do it at nursery, but he is alot better now.
As you have concerns I think it would be best to start the ball rolling. If he isn't on the autistic spectrum then he won't get a diagnosis. But if he is he needs to start therapies as soon as possible for the best outcome.
As you are in Ireland, you could contact the national autistic society on www. nas.org.uk. They should be able to give you some information relevant to where you are.
I would also add that at his age you couldn't compromise with my son. He wanted to do what he wanted to do and he wanted to do it in his way and be left alone to do it. Any attempt to move him to something else, or stop him to eat or leave the house etc would involve tears and tantrums. He came across as a very strong willed spoilt child, when actually he was autistic. At nursery he didn't join in with the other children and he didn't want them to join in with him. He liked to sit on his own doing puzzles or lego. He played with toys as they were supposed to be played with. He would notice the smallest details and pick up fluff off the floor or remove pieces of cotton etc. If he was doing something and I tried to help him he would throw a tantrum. Obviously he is alot better now, and he didn't get a diagnosis until he was nearly 5 because it was only when he started school and his teacher could see that he simply couldn't follow verbal instructions or join in with other children that she raised her concerns. He was also very unhappy at school and nearly every day he would be in tears and throwing tantrums at school. No parent wants that for their child. You need your child to be happy in school so that they are motivated to learn, not hating every minute and waiting for home time.
Thanks for all that Sally. I have to say that on reading your first response and I was answering yes to most of the questions you were asking in a weird way it was nearly a relief. I know that this is not a diagnosis and we still have to do the whole medical thing but I have a feel for where I am heading now. In relation to your last message. with regards to his speech mostly he will converse with you but sometimes his responses are not connected to the conversation. He doesnt like his hair being brushed but then again my daughter didnt and doesnt like it either. As for food and tastes etc. When he was very young he would literally eat anything. His dinners were always huge as he would just keep opening his mouth for more but now he is very finicky he likes what he likes and thats it. He wont try a new taste no matter how it looks (have tried using cookie cutters to make shapes of his veg etc). I'm not saying that he is autistic but he is showing a lot of autistic tendencies but it is the not knowing that is killing me and I feel that I am getting it from all angles i.e. Playschool etc and I know it is hard for them but I dont know how to make it right.
If the playschool are concerned, then I think you should go to your GP and begin the process. If a child is on the spectrum it is usually around this age that they start to have problems because their peers are beginning to develop their language and social side, whereas these children aren't progressing.
For assessing his sensory issues I found a book called Sensory and Perceptual Differences in Autism and Aspergers by Olga Bogdashina very useful. At the back of this book there is a caregivers questionnaire that you can complete to get a sensory profile of your child. The Autism Outreach Department in our city invited Olga to speak to professionals and parents and they use her questionnaire to get sensory profiles of the children. So I know it is reputable. An Occupational Therapist can also assess using something like the Winn Dunn assessment questionnaire - waiting times for OTs are long (we waited 2 years in the UK).
Overall it took 18 months for my son to get a formal diagnosis, although the speech therapist told me to expect autistic spectrum disorder as a diagnosis when she saw him some 14 months earlier. So an experienced SALT should be able to tell you whether to expect that as a diagnosis.
Because it takes so long for observations and assessments to take place in school and home it needs to be started as soon as possible because he will be due to start school soon and he may need supports in your local school or even a different school from your local one. It is very hard at the beginning to even consider different schooling options etc, and you may need to wait and see if he achieves or fails in the local school environment. But you need to start finding out about what is available out there and what your son's educational rights are by law. Do you think your son will be able to cope in mainstream infant school without supports? If he is giving unrelated answers to questions that would indicate that he isn't going to understand classroom instructions.
My son was diagnosied in March 2007 and by that time all the special needs places in mainstream schools were full. So I had to get him in through the backdoor and also go to an Educational Tribunal.
If you find an infant school that has experience and expertise in autistic spectrum disorders (and your son is in the process of getting a diagnosis of that) then that is the place he may be best suited. In England they have mainstream schools that are Enhanced Resource. This means they have mainstream children and a set amount of special needs places. In my case, eventhough the special needs places were full I managed to get him a mainstream place and moved him to that school. Once they had offered him a place they couldn't withdraw it on the grounds of his special needs because that would have been breaking the Disability Discrimination Act, and as he was in the process of getting a Statement (do children get Statements of Special Educational Needs in Ireland?), by law that school had to meet the requirements of that Statement whether he had a special needs place or not. I went to an Educational Tribunal because I wasn't happy with the amount of support being offered in his Statement. I went to tribunal and got everything I asked for because I had evidence that he needed it.
It isn't your job to make things right. The Playschool is right to raise concerns. Now you need to pass those concerns onto your sons paediatrician and ask him to refer you to a team of professionals who are experienced in diagnosing autistic spectrum disorders. This will include a SALT, Clinical/Educational Paediatrician, Clinical/Educational Psychologist - if you think he has sensory issues then request an assessment by an Occupational Therapist. Don't be put off if they say it takes years, make sure you are put on the waiting list.
I tried to raise concerns about my son at about the same age, but was basically fobbed off. So the infant school raised their concerns when he had been there for around 6 months. He was a very unhappy little boy in that school, and I do regret not pushing and demanding assessments when he was 3+. But back then I didn't know what I know now. Please remember that all therapies/supports etc run on budgets and unfortunately no-one is going to encourage you to have your son assessment because if they find something they have to find the funding to meet his needs. So please make sure that his needs are fully assessed and that all professionals also give recommendations as to how those needs will be met in school during lessons and during playtimes/dinnertimes.
If you do have Statements in Ireland I am happy to send you a copy of my son's Statement for you to see the level of support that can be achieved in school.
In the UK the local authority has a Parent Partnership service which is there to help parents navigate their way through the process of a diagnosis and supports in school. You could contact your local educational department and ask them if there is a similar service.
Sally thanks a million for all your advice. I am so baffled by all this at the moment and scared at the same time. I feel helpless and totally lost but thanks to you at least I have the termonology to at least sound as though I know what I am talking about. He is under a specialist at the moment for problems with his bowels. We have been attending for over a year now. From your last message I got on to the Autistic Society of Ireland's website which was fab in plain and simple language and I saw that toiliting can be an issue for kids on the Autistic spectrum. I moved his appointment forward from the end of march to the 9th Feb to see if I can get concrete answers about his bowels i.e I want them to do a scan of his bowel to see if the problem is with his bowel or if not is it a behavioural thing and if it is a behavioural thing then could it be causing these other issues or are the other issues causing the problem with the bowel. I am hoping for the specialist to refer me to the Psychology Department through the hospital seeing as his file is there already and maybe I could bypass even one of the waiting lists. I found a centre here also that has a private assessment clinic for Autism Spectrum Disorders where they do a multi assessment i.e. speech therapist, occupational etc. it is €1,500 for the test. I am attracted to this for 2 reasons, first being there is only a max waiting list of 3months and 2nd all the professionals are under one roof but the down side is they are looking mainly for disorders on the Autistic Spectrum and if he is assessed and proves not to be on the spectrum we will have to still go through the assessment process for say ADD/OCD etc. They told me that if it is not Autism, they may suggest what it might be and then point us in the direction of having him assessed for that. I dont know what to do.
Find out what the qualifications and experience of the professionals in this centre are. How long they have been diagnosing ASDs.
What standardised tests they will do. I'm presuming it will be a mixture of standardised tests (these are set clinical tests to test for abilities), as well as observation and interacting with the child to see how they react.
Make sure you write down beforehand every kind of communication problem you notice eg. giving unrelated answers to questions, repeating what people say or words/phrases from TV/DVD, does he mix up pronouns eg. me, I you, she, does he pronounce words incorrectly eg. map or nap, does he have a strange accent or place the emphasis on the wrong section of the word, does he interact just to get his needs met.
For one day make a diary of everything he says to you to show how often he is interacting and what he is saying as well as everything he does.
On that day you can set up the house so there are things for him to do, but don't sit down and play with him unless he requests it, and if he doesn't request it after a significant amount of time (eg. 30+ minutes) try to join in with him and see what his reaction is. Does he try to include you in his play, is he paying any attention to you at all, try to stop him playing with whatever he is doing and try to move him onto something else and see what happens.
He may be too young to test for semantic pragmatic speech disorder - but I would mention it to see how he can be assessed in the future.
Write down all his social skills difficulties eg. not able to share or take turns, avoiding interaction or not interacting appropriately, can he sit on the carpet with the rest of the children at playschool, is he interested in his peers but doesn't appear to know how to interact, or is he totally disinterested in them. At social gatherings what does he do, is he with the rest of the children or is he off doing his own thing.
Is he interested in colouring or painting. Does he get upset trying to keep within the lines or does he insist that you do it for him or does he just refuse.
Write down any sensory behaviour eg. flapping, spinning, attention to detail, does he line up or stack toys, does he play with toys appropriately or does he play with bits eg. spin the wheels of cars, does everything have to be just so with clothes, toys, how things are done, does he need routine, does he get upset at change or transitions, is he oversensitive to hair brushing,washing,cutting, nails cut, socks and shoes, clothes tags. Sensory difficulties including sight, sound, smell, taste, tactile, balance and co-ordination, so try to give examples of each sense ie. does he climb at all, does he climb without awareness of danger, does he scream if his feet leave the floor. If he is always paying attention to bits of fluff or a piece of cotton or likes bright shiny things etc then write that down. Does he not respond when you call his name, does he cover his ears if you put the vaccum on or does he like lots of noise.
Ask how long the assessments will be. Will they assess on more than one occasion.
Did you find this clinic through the Autistic Society of Ireland?
Do you know how long it will take for him to be assessed through the NHS in Ireland?
If you think they are reputable, and it saves you alot of time (maybe more than a year), then it is an idea to know if he is on the spectrum or not.
You can still go to your GP and ask for a referal as well and use that as your second opinion. Don't tell them you are going private as well at this stage as they may say they will wait for the private results. When you have the results, if positive you can go back to your GP and tell them the outcome.
The results can be forwarded to the various NHS departments.
Will the money you pay just go towards a diagnosis. Or are they going to do full assessments and reports that will detail the needs of the child and give recommendations for the supports and provision he will require in school?
If it is just to get the diagnosis, you will still need for the NHS professionals to assess individually as well to detail his needs and give recommendations regarding supports in school. And you may find that those NHS professionals don't go into much depth. But to honest, at his age, a diagnosis is the most important and a rough idea of the severity. It may take some time for you to see what his difficulties are and the severity of them. There are many assessments, for example those for dyslexia, that cannot be carried out until a child is age 7. This is to do with typical neurological development and all 'typical' children should have a basic knowledge of reading and writing by age 7. If by that age your child is still unable to read or write then you know you have problems. That is why I also mentioned that they may not be able to test him yet for Semantic Pragmatic Speech Disorder.
Speak with your local Education Department at the Council and find out what kind of schools are in your area that cater for children with a diagnosis of Autistic Spectrum Disorder (or ADHD for that matter as they tend to be the same schools). You may find there are some children in mainstream, some Enhanced Resource school (this is a mixture of mainstream and special needs - if you have that in Ireland), and some Special Schools (where all the children have special needs).
Also ask if their testing is going to give you any indication of the kind of schooling that is most appropriate for your child.
Regarding schooling, my personal opinion is that unless the child is high functioning Aspergers and academically brilliant, I think a school that is a mixture of mainstream children and those on the spectrum is the best - as long as the child is interesting in social interaction and the school provides the appropriate supports to make that social interaction successful and a positive experience. If the child is quite severely autistic and isn't interested in other children and also is showing some learning difficulties as well - then a special school may be better.
Remember that any diagnosis can change if the child improves enough. My son is much better now at 7 than he was at 4.5 when we got the diagnosis. But he still needed to be in a school environment that had experience and expertise in teaching children on the spectrum because he simply wasn't making progress.
Find out if your authority does Statements of Special Educational Needs or some other kind of legal document. The Autistic Society of Ireland should have information about that. If they do, then as soon as the diagnosis issue is out of the way, you need to start working on that as most special educational places require the child to have a statement in the UK. So your child will automatically go to a typical mainstream school without one. So check how things are done in Ireland.
Infact, the above is more than enough for you to be getting on with for now. When you have a diagnosis in 3 months time you can email me. Send me a private message via medhelp and I will reply to you with my email address.
Regarding bowels. Does he have encopresis?
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