new and ineed of some advice about my son

[suzanneiom1]

Hi. i have a 22 month old son who doesnt talk at all. makes lots of noices sometimes bables says dadadada and thats about it, I called the health visitor out as i was alittle concerned, she was alittle more concerened the fact he wasnt pointing at anything either, she as reffered him to speech therapist and to get his hearing checked. she also mentioned about seeing a child doctor to see if he has any learning difficulties. He has his first assesment next month. Since she came round i have been constantly roaming the internet and have found acouple of simular traits to autism, one being hand flapping which my son has done since a young age when excited. I honestly dont no what to think anymore?!?! he understands most of what we say, is fairly fine around adults and children even thou he has not socialised an awful lot which is my fault.. he has a good memory remember his favourite parts in books, tv shows, ect.. but just no speech or pointing.. has anybody any advice for me, im feeling abit of a failure about it all thinking maybe iv done things wrong

 

thanks for reading

suzanne

[Suze]

Hi welcome, I don,t have any experience of a pre school dx, but it appears all the right things are happening.ie the health visitor is on board and his hearing is being checked.My guess is they will wait and see, and keep track of how he is developing.Even at that age though my son was displaying some autistic tendencies.He had a pre occupation for the vaccum cleaner and wouild play with it all day.He also had a very keen interest in tractors and diggers and would fiddle with them for hours.Not toy type ones but proper dye cast models.He hated to be looked at and would scream if you tried to get him to focus on anything else.He was a very difficult eater and would,nt have lumpy foods at all.He was a nightmare at soft play places and I stopped taking him.He laid all his toys out as a display and did,nt play with them and went mad if anyone moved them.He did,nt say much before his 2nd birthday and his first word was tractor , lol ...

 

 

..............try not to worry too much, in some respects its a waiting game, but you have taken the first step to getting things looked at , suzex

[Kathryn]

Hi Suzanne,

 

Welcome to the forum

 

It's a long time since I had 22 month old so I don't know if what you're describing is significantly outside "normal" range of development or not. Hopefully others with younger children will share experiences and views.

 

Try not to blame yourself, if your son is healthy and contented and gets attention from you, you're doing OK as a mum and as Suze said you're doing all the right things to get him checked out by professionals. If there are real concerns, the sooner they are identified the sooner he can start to get any help he needs.

 

It may help to keep a notebook of your own observations so that you can share these with the doctor who does the assessment.

 

K x

[Sally44]

It is good that his lack of speech has been picked up and he is being referred.

 

It might help if you were given an overview of where he is going to be referred, who will see him, what assessments will they do and does this multi agency team have experience of diagnosing autistic spectrum disorders?

 

This is a link to the Autism Exemplar, which gives an example of how a child would be referred and to whom. But it can vary from area to area. And the fact that it has timescales is useful too - although I've never come across anyone who experienced those timescales, it is worth having the examplar to refer to if things seem to be taking for ever. http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4090571.pdf

 

Is your child at nursery and if so how is he doing there.

 

Looking back, my son was showing differences from a very early age, but he did not get a formal diagnosis until he was 6 eventhough I had been to the GP and talked with the Health Visitor about my concerns, everyone seemed prepared to wait. I think that was a huge mistake, because when he started school he did not have any of the skills needed and he simply did not cope.

 

What I remember from him being a toddler was that he was very undemanding. I could put him on the floor with a puzzle and he could stay there for a long time. He never demanded my attention at all. He was putting two words together by that age, but he only talked to get things he wanted eg. a drink, or food. He never chatted as other kids did. He was not interested in other children, and did not get up to all kinds of mischief as my other child had. He didn't seem to have the curiosity that other children did.

 

He did bring me things and he did point. At around age 3 he suddenly began to repeat lots of things he had heard from TV. He repeated back what we said to him. He often appeared deaf.

 

He was under and over sensitive to things eg. would cover his ears, and then appear deaf. He would smell things, he used to spin alot, occasionally he flapped when very excited. He often get completely distraught and I would have no idea why. It might be because I turned the TV off, or put his toys away, or we had to leave the house. It was a total over reaction to what had happened, and sometimes I had no idea what had triggered it. He used to get upset to the point he vomitted.

 

I know it is a very worrying time. You want to know what the problem is [if there is a problem], but you don't want to be told your child has a lifelong neurological difficulty that is going to affect his learning, relationships, future prospects etc.

 

Every child on the spectrum is affected differently and presents differently, however they all have to have difficulties in the same areas to receive a diagnosis. When the speech therapist sees your child ask them what they are looking for - that will help you see and understand the difficulties. The speech therapist told me to expect a diagnosis of ASD because my son's speech and social communication difficulties were typical of a diagnosis. However he was observed and assessed for a further 18 months before he got the final diagnosis.

 

Your main consideration now is to find out what his difficulties are, and what kind of nursery or primary school he is going to need. For him to be able to function and cope in a mainstream primary class he is going to need a certain level of language skills [both receptive and expressive] and social communication skills. He will need to be able to cope in a noisy distracting environment. He will need to be able to pay attention and follow verbal instructions. He will need to be able to hold a pencil and be able to put marks on paper willingly. He will need to comply and not wander around the room. These are all things you need to consider as you are seeing the various people you are referred to.

 

It would be very helpful to you and professionals if you keep a diary about the things he says and does, especially if they seem unusual to you. It will also show any progress he makes, and will help you have the information you need to give to professionals.

 

I don't know why you would think that his difficulties are due to you. Children can be bought up very badly, with neglect etc and still they are talking and socialising etc. Children with an ASD do not learn typically, that is the whole point. They don't learn to talk and play by being with talking, playing children and/or adults.

 

If the child is undemanding you can find yourself doing less stuff together. BUT that is a symptom and not a cause. And anything you do do, your child has to enjoy. There is no point trying to force things onto him if he cannot or isn't willing to do it. Often these skills do begin to grow later on, but they may never be the same or at the same level as other NT children.

 

Try to spend short bursts of time doing things he likes. If he likes puzzles, you can do one together and use very simply, short lanuage [two or three words] to talk about what you are doing. If he gets upset at you joining in, you can just comment on what he is doing. If that also upsets him, he may need the quiet to focus on what he is trying to do. Again, all these kinds of observations are useful to know.

Edited October 12, 2011 by Sally44

[suzanneiom1]

Hi thanks for everyones replys, harley starts pre school january, and the teacher there has already told me if she does notice anything or that he needs extra help she will be able to do this. other then his lack of speech and hand flapping i cant really see anyother symptoms but now keep analysing everything he is doing. the past few days he has developed screeching and moaning alot and i think this is because he is really gettiing fustrated because he can not comunicate. when he wants anything he will either moan or try and get me up as he doesnt point. he can play on his own but likes me to join in, brings me books, he brings me his blocks and puzzles and sometimes when i walk away will cry. he knows what things are, but if i asked him to point he will not do this and im worried when he is assesed this is what they will look for. I dont no how i will cope if they label him with autism, sorry to be so blunt i suppose i am still abit sceptical of the diagnoses because if people have traits but arnt autistic how do they differ?!?!?

[Suze]

It can be a scary word if its not expected , but if he is dx its important his diagnosis is acknowledged as he may need more help at school etc and a better understanding too.My son was,nt dx till he was 6 yrs ...alot of his behaviours I never really noticed as he was my first and I thought they were normal.He has been through some tough years but hes now 16 yrs and doing remarkably well at college .(studying tractors lol).Many people who meet him find him a remarkably likeable chap he loves to chat and is very polite, and as he is very rule lead he is totally against smoking alcohol, and breaking any laws :rolleyes: .I,ve got 3 kids and he has been a pleasure in many ways .Autism can be scary at first but every autistic child is as different as a neurotypical child and they can develop and succeed just as well as the next kiddie. .

[cmuir]

Hi

 

I recall how my son was at 21 months – he only said about 3 or 4 words, didn't look at people when being spoken to, required little sleep, etc. I didn't think too much of it until he was a little older. I remember R would count up to 20 and then he seemed to regress. Like you, I was in regular contact with our HV and GP who were frankly dismissive (I was told that I should stop working full-time, which spoke volumes!). By the age of 3, I was at my witsend – I knew something wasn't right and it wasn't because I was a first time stressed out mum. I contacted HV and GP again making a written complaint requesting that my concerns be taken seriously, etc. It was only then that the ball started rolling. R was assessed over a period of 1.5 before being diagnosed with AS. I recall the whole thing being an emotional rollercoaster and frankly was all consuming. During the process we saw Paeds who emphatically said R didn't have AS. I'm no expert, but I felt they were very dismissive of behaviours, etc that I was reporting to them. Difficult for them to get a good picture in a clinic environment over space of 20 minutes. R was also seen by an OT, SALT, etc and they were weren't so dismissive. I trolled the net and everything kept coming back to the same thing – AS. I then kept a diary of things that struck me as being odd. I was given the name of an ASD specialist whom I phoned and literally begged to see. She agreed to see R, asked lots of questions carried out an ADOS, before diagnosing R with AS at the age of 4.5. It was a long process which relied on a number of specialists, and really only started at an age when issues start to become obvious (aged 3).

 

I've given you a bit of my life story (sorry!), thought it might be helpful given the stage you're at. I think all you can do is keep in touch with your HV and GP who'll assess whether kiddo is meeting the expected milestones and take things from there.

 

Best wishes.

 

Caroline.

[suzanneiom1]

hiya thanks for you reply again good to hear a nice positive story.

 

cmuir- what things were you noticing that were different?? i dont no whether im in denial about the whole thing but i really dont think he has autism and think maybe he has development delay, he hasnt even had his hearing checked yet.. for me its the hand flapping and lack of talking but we havent socialised a great deal just lack of knowing people with children, but when i take him to soft play centers he finds other kids amusing and likes to me chased, its more his milestones at the moment that arnt up to scratch. Im abit of an emotional wreck at the moment, i dont no whether im over reacting with it all.

[suzanneiom1]

also where did you get the name of the asd specialist, i think this is something i will consider

[dekra]

Hi Suzanne,

 

A lot of what you are saying is similar to my son also but so far he has only been dx with global developmental delay. The important thing is that you have the right people on board with your concerns and they are taking you seriously. It too until well after my son's 3rd birthday for anyone to agree there was a significant issue and he was 4 before he finally saw a paeditrician and got a dx. In the approx 6 months since my husband and I first shared our concern to anyone other than each other of possible ASD I have managed to achieve things for him that were not possible before - all through being able to have my concerns taken seriously.

 

You seem to be doing all the right things although I'm a novice and you've already had some great advice from more experienced members.

[Sally44]

When a child has been flagged up, and referred on, it will take some time before a diagnosis is given - if one is necessary.

As you say, he needs his hearing checked.

All I want you to be thinking about is that you need to be thinking about and talking to professionals about the type of placement he will need for reception year.

If it seems he will need either a special school, or significant input from SALT, OT etc, or 1:1 support in school, he will need that specifying in a Statement of Special Educational Needs.

Don't worry too much about that NOW, but you need to think about asking him to be assessed [if there are still real concerns] the year before he is due to start school. Statements take 26 weeks from start to finish IF the LA agree to assess, and if they assess and agree to give your son a Statement, and if the Statement is a well worded and legally binding document. You can end up having to appeal at any of those stages.

Once his hearing has been checked, I presume you have an appointment with SALT too? You may want to bring up whether it would be useful to either teach him some basic hand signs, or use pictures, for things he can request such as a drink etc. If he is trying to communicate, but is struggling [and at this stage it maybe due to a hearing problem], then you need help and advice on HOW to communicate with your child and for him to communicate with you.