ASD

[AndreaA]

Help. My son was diagnosed in September as having ASD. I have just received his report. He is only 4 and we are in our last year of nursery so have the joy of looking for a suitable school etc. The education psych is coming out in December to see him in the nursery setting. I increased his hours at nursery to help him for when he goes to school next year. He now attends 5 x 2 1/2 hour sessions a week. It has taken this first term for him to feel settled in that he doesn't have tantrums going to school. Now I have the joy of the tantrums coming home. He doesn't want anything to come to an end whether it is school, playing with his favourite toy, watching a programme on tv or listening to a song on his c.d. We go into meltdown. I am coping with this but finding bedtime hard. He goes to bed ok but insists on a light on as he is scared of the dark. He will wake several times during the night and always ends up in my bed. He still wears nappies and manages to saturate them at night so I do have to change him before I go to bed. He insists on a drink for the night and if I don't leave one for him he gets very upset. He drinks so much.

 

Any ideas on a suitable bedtime light. Someone mentioned a nightlight with stars projected on the ceiling as its soothing. It needs to be something that stays on all night due to his fear of the dark. He shares a bedroom with his younger brother and frequently wakes him up.

 

Any ideas gratefuly received.

 

Thanks.

 

Ang.

[Sally44]

Although you've posted about sleeping, I wanted to ask about where you are in the Special Educational Needs process. Soon he will start school, and if he needs extra help, or a place at a school that has experience of ASDs then he will need a Statement to get such a place. So is he being assessed towards a Statement? Is his nursery a mainstream one and how is he supported there and how does he cope there.

With my son we installed a dimmer switch and just turn the light down a little bit for him. As a toddler he used to take himself off to his own bed, which was brilliant. From around 4 he became scared of the dark - he is now 8 and it is as bad as ever. He won't go anywhere in the house without the lights on, and now he won't go upstairs on his own. Many times he sleeps with my husband and I sleep in his bed. My husband snores, so I think I get the better deal. He also has some cuddly toys that he likes with him to stop him being scared. One of these also has to come to the cinema with us whenever we go.

Toiletting problems are so common. I was lucky. My son was out of nappies at 3 day and night. Then he relapsed at around 4+ and needed them at night again. I just used nighttime pullups, or the absorband sheets you can put over the mattress and cover with a sheet. It really depends on how big the problem is. If it is every night, huge amounts of urine, then keep with pull ups or you'll be washing all day long. Also check whether you can get nappies for free because it is a toiletting problem linked to his diagnosis.

He sounds like he really likes his routines. It also depends how good his language and communication skills are. I told me son when he was having his last drink in the evening because if he drank more he would wet the bed.

Also it is hormone controlled. I don't remember which hormone it is, but if you don't have enough of it your body keeps producing urine throughout the night, whereas normally the body reduces production until you wake up.

Is he using a toilet at all other times? If so then that is good. Get him into a routine of going to the toilet when he goes up to bed. Maybe read him a story, or do whatever the normal bedtime routine is, and get him to go again.

There are alot of other gadgets and things. But he is rather young for alarms and stuff like that. And to be honest I don't think they are of much help and are not particularly ASD friendly. An alarm for a child with a sound sensitivity is not appropriate.

Your main concern may be that his being in nappies is starting to seem inappropriate to you compared to other children. Unfortunately that is part of having an ASD. Skill sets and developmental levels are not across the board. Your child might be reading ahead of his peers and still be in nappies at age 6. Very frustrating and no-one can give you a manual of how things will turn out. You can find yourself trying to keep up with what the 'peer' group are doing and achieving. I did that, especially in school. But sometimes you do find that your child cannot do it and to keep pushing to catch up is just going to cause you and him stress. Relax. There is plenty of time. He most probably will get to it and it will take as long as it takes.

[JsMum]

 

 

Our sky night light broke last week, hes used it that much, the problem with the stars is they can give visuals, so we covered the stars and just had the blue swily light shinning, we too have a dimmer, weve been researching the SAD Light boxes these gradually go dim and then light in the morning, the real benefit is that they produce melatonin naturally and they dim gradually so by the time the light goes out there asleep. we are still investigating this.

 

The tantrums after nursery could be overload, or just sheer exhaustion, Im learning to drive for example, I had to steadly progress from an hour to 2hrs but I cant concentrate for that long so gradually built it up, but what was significant was how mentally tired I was, Physically tired too, it took the stuffin out of me, Its taken me a lot longer to process the instructions and information too, hence I am still learning to drive, but I know even after the lesson is over the lesson is still going over and over in my brain, your son needs a chill out zone or a multi sensory zone, it may be that for a couple of hours he just cant process further information, so ensure he has a suitable activity after coming home with pre warnings to when something is going to end, this could be included at nursery too, connecting them together.

 

ABC diarysheets are good to get a bigger picture and too see if there is any coinsedences and to maybe evaluate consequencys so modifying the result of his behaviour.

 

Transition into school will require a very detailed programme with plenty of visual and muti sensory aproaches, so social stories, visual time tables, time timers, behaviour stratagies specifically for Autism/special needs, communication and social programmes.

 

I remember J been four clearly, a very problematic age for us, though J was four he was developmentally a toddler in many areas. so could this also be a factor, I now meet Js developmental age rather than his true biological age.

 

JsMumxxx

 

 

 

 

 

[bettyhen]

My son still finds change difficult BUT he is getting better about regular changes, eg, bedtime etc. It means we have to keep to quite a rigid routine but it works and sometimes we find we can move out of the routine as long as we explain it carefully. We too have tantrums but at least when they occur at home you can deal with them in the way that best works for your child - others won't.

 

Re the nappies. My son is still wearing pull ups in bed at 6. I've not even tried to do without them because they are always soaking. The thud as the nappy hits the floor in the morning is tremendous. In the scheme of things, I've pushed this to the back of my priorities because getting him to cope well day to day feels more important to me.

 

Good luck. It's really hard and I agree with Sally about going down the SEN route - we've got a diagnosis meaning my son is on School Action Plus and this is vital if you want them to look after your son's needs.

[Tally]

Hello, and welcome to the forum.

 

Many people with ASD have difficulties with something called Intertia. This is not just about getting going, but also stopping, and changing from one activity to another. It might help if your son has some warning that an activity is coming to an end.

[NickyB]

Hello and welcome

 

I don't know if it's any help, but my son's school used timers to warn him of impending changes, and a visual timetable help him understand what's coming next. Now he's a bit older, we give him a 5 minute warning and then count down the last 30 seconds - mind you, we do get some odd looks when we do that in public

 

Hope you get school sorted without too much hassle

 

Nicky <'>

[AndreaA]

Hi,

 

We have an appointment with the Educ. Psych on 7 December. I am currently filling in a daily diary sheet which I am linking with the nursery so when she comes out I can show her why we need to consider statementing. The only problem I can see is that he feels very safe in the nursery as he has been attending the last 2 years and formed good relationships with the staff there. It is familiar to him. It did however still cause problems when I increased the days he spent there! What will he be like at school. I have had a meeting with his key worker at the nursery and we are working together to do lots of visual aids to make the transition slightly more bearable. They are not sure what IEP to put in place as he is very good at most things. It is his social skills that are lacking i.e. standing to close to other children and flapping hands (a bit upsetting for the other children sometimes), crying or refusing to change activity, fooling around as he has learnt this gets a laugh out of the other children. Sometimes not asking for the toilet. We seem to go through phases of this. He will be dry for so long and then go through 2 weeks of constantly wetting. He does not like to poo on the toilet but will try to hide and go in his pants! I worry when he goes to primary school that unless someone helps him he will fall so far behind and get lost in the system. His other great worrying trait is bolting off when we are out walking. I have just been to get a wristlink for him but dreading using this. I am hoping to turn it into a game i.e. he is the tow truck and he has to tow Mummy up the road. To get him motivated we tell him to get his rocket launches working. He will respond to this rather than to me asking him to go up the stairs to do something.

 

I am going to push for a statement as the schools I have found for him are mainstream and smaller class sizes which will be a better transition for him and I feel he would cope with. Unfortunately they are just outside my catchment although they do accept from where we live. I need to list the strengths and benefits of this school for my son to the Council when submitting the app. Unfortunately I cannot rely on the statement process as this could take up to 6 months and no guarnatee we will get it. I just feel this school is the best to help him anyway regardless. They also have experience of dealing with children on the spectrum which is beneficial.

 

Thank you for your responses. It is nice to know I am not alone and certainly not neurotic as some would have me believe!

 

Andrea

[JsMum]

Hi,

 

We have an appointment with the Educ. Psych on 7 December. I am currently filling in a daily diary sheet which I am linking with the nursery so when she comes out I can show her why we need to consider statementing. The only problem I can see is that he feels very safe in the nursery as he has been attending the last 2 years and formed good relationships with the staff there. It is familiar to him. It did however still cause problems when I increased the days he spent there! What will he be like at school. I have had a meeting with his key worker at the nursery and we are working together to do lots of visual aids to make the transition slightly more bearable. They are not sure what IEP to put in place as he is very good at most things. It is his social skills that are lacking i.e. standing to close to other children and flapping hands (a bit upsetting for the other children sometimes), crying or refusing to change activity, fooling around as he has learnt this gets a laugh out of the other children. Sometimes not asking for the toilet. We seem to go through phases of this. He will be dry for so long and then go through 2 weeks of constantly wetting. He does not like to poo on the toilet but will try to hide and go in his pants! I worry when he goes to primary school that unless someone helps him he will fall so far behind and get lost in the system. His other great worrying trait is bolting off when we are out walking. I have just been to get a wristlink for him but dreading using this. I am hoping to turn it into a game i.e. he is the tow truck and he has to tow Mummy up the road. To get him motivated we tell him to get his rocket launches working. He will respond to this rather than to me asking him to go up the stairs to do something.

 

I am going to push for a statement as the schools I have found for him are mainstream and smaller class sizes which will be a better transition for him and I feel he would cope with. Unfortunately they are just outside my catchment although they do accept from where we live. I need to list the strengths and benefits of this school for my son to the Council when submitting the app. Unfortunately I cannot rely on the statement process as this could take up to 6 months and no guarnatee we will get it. I just feel this school is the best to help him anyway regardless. They also have experience of dealing with children on the spectrum which is beneficial.

 

Thank you for your responses. It is nice to know I am not alone and certainly not neurotic as some would have me believe!

 

Andrea

 

If he has a statatory assessment now and then go towards a statement, there is no reason why he couldnt start school with a statment in place, its wholey up to the LEA if they want to provide one, you could say that his needs wont be met unless he has a statement in place for transfer to mainstream school, the statement also needs to state the school YOU want in part 4 so ensure that this is stated.

 

But it doesnt have to take six months after he starts mainstream school, the assessment can be made now.

 

My friends son severe ADHD/AUTISM has just started mainstream he is four and has a full time statement not only 1-1 but 2 adults so 2-1 as he requires two members of staff to manage his behaviour.

 

So it can be done, it totally lays on the ed psychs head so ensure you make it clear that you expect a statement from day one of primary school, how much of the time do expect he needs support, an hour a day, couple of hours, or full time?

 

JsMumxxxx

 

 

 

 

 

 

 

[Sally44]

My son also had problems starting, stopping and transitions.

Regarding starting he didn't seem to know how to start, where to start, what he needed to start etc. He also did not want to start something like drawing/painting because he wanted a perfect replica of something he had already seen. So if he wanted to draw a robot he wanted to draw a portrait of a robot he had seen on TV.

Regarding stopping. Everything has to be completed before it can be left. That is regardless of what it is. A film has to be finished, so does a puzzle, a game etc. You cannot stop something midway and go back to it later. In later times I found this was also responsible for many tantrums eg. when he was 'playing something in his head' and I would say something to him, or ask him to do something he would throw a tantrum and scream at me 'you've ruined it, its broken, i've got to start all over again. I read something similar on the Wendy Lawson website (she is an adult with autism). She explained that she too got angry because her thought processes were disrupted and 'didn't they know that would mean she would have to start all over again and re-schedule it'. Well no they didn't. As Wendy says, she later learnt that other people can think - put the thought on hold - hold a conversation - return and pick up the thought at the point they left and continue. She cannot do that. Many on the spectrum cannot do that. That is why they have to finish before they 'lose' it.

Regarding transitions. He always found it hard. Would get angry or upset. I am not sure exactly what it was about it that caused such distress. Maybe it was the leaving. Or maybe it was the unknown expectations of what he was about to start.

 

When he started school at 4.5 years I knew he would have problems. He had absolutely none of the skills that the other children had. He had never picked up a colouring pen, looked at a book, played a game.

 

Now he is 8. He is in what our LEA calls an 'Enhanced Resource School'. It is mainstream but has extra funding and all staff are trained and experienced in ASDs. The school has a specific autism unit. The mainstream part of the school has about 5 children with an ASD per class. In my sons class there are 18 children. Around 9 have an ASD and the remainder are on SAP.

 

Many of the above problems have got alot better or he has grown out of them. This week in school they have been doing the 'X' factor. I thought it would be a disaster for him because he would either get upset that he failed, or get anxious if he won and had to perform in front of the school. They are currently doing auditions. He did some magic infront of his class. Bearing in mind these are tricks he has only ever seen once on TV, and has never even shown me - his TA said he amazed everyone with what he did!! So, along with the difficult times, these children are also amazing sponges that can and do soak up amazing amounts of information. It is teaching them how to connect it all together and use it that is the difficult bit.

 

Anyway, nice to see you on the forum.

 

There are lots of people here that have years of experience, and most of us have gone through, or are going through what you are now. So feel free to ask questions.

[Sally44]

By the way. Everything you have mentioned is familiar. You are not neurotic. You are his mum and you know him better than anyone else. You are not mad. Many times parents can be fobbed off by professionals for years. I too was told that there was nothing wrong with my son, and that if school had any concerns they would raise them. School did raise concerns 6 months after he started reception. It took until he was 6 to be diagnosed, and it took a further 12 months to get a Statement in place.

Then I found out that the GP had fobbed me off (and he wasn't the only one). Children start school with Statements. Children have therapies and support in nursery.

You need to find out about the Special Educational Needs process and the Statement. If you don't know your rights or your son's rights you may not get the support your child needs. Support costs the LEA/school money. It is not in their interest to support any child to the extent they require. They do tend to do the basic minimum and not what the child needs.

Contact your local National Autistic Society Group and ask them about the Help programmes (for parents of newly diagnosed children), and also about any SEN seminars they are doing, specifically about the Statementing process.

[bettyhen]

I'd like to echo what Sally says - schools and others tend to imply that you are neurotic all the time, sometimes subtly, sometimes overtly. There has been a lot said about how my son does well when they are 'firm' with him, implying that I'm not. They also tell him to be good for his mummy (in front of me) suggesting that he's acting up only for me. Interestingly though, they aren't as 'firm' as they suggest offering rewards more than simply being 'firm'! Apparently they have told another mother with a more severely autistic child that she isn't firm enough with him!

[sesley]

although his chronical age is four shave off about a third and you will understand his mental and social age. What you will need to have is loads of patience diffiucult i know but it helps. my son is 10 this year and climbs into bed with me, i let him because he needs the close contact and it will help to foster a confidence in you,someone he can turst when things are difficult. toilets and nappys do evolove eventaully,though in saying that, my son will mess himself rather than answer the call of nature,as he is totally engrossed in what he is doing. try to find out if there are any support groups,of parents with children like yourself and if you could particularly find out about any Earlybird programs run by the NAS to help you understand about autism and give you confidence to cope with whatever challenge you face. at night have a night light or a light on a timer,which switches off when he does sleep.

[trekster]

Hello

 

Drinking too much could be a sign he needs to be off gluten and dairy. It was for me along with other symptoms.

 

As for the not being able to stop anything it is to do with his fear of change. For me i need 10 mins warning before something

is going to change and also a very good reason why it is changing. Its called "transitioning behaviour" and is to do with inertia.

 

Can you apply for help from Portage? Or use a visual timetable/supports? Sounds to me like he needs more structure and sometimes

you might have to make a deal with him "brush teeth then read book" for example. So mention whats happening 1st then whats happening

next. Many autistics have problems with a sense of time which IMO complicates the "fear of change" part of autism even more.

 

Alexis

[trekster]

I'd like to echo what Sally says - schools and others tend to imply that you are neurotic all the time, sometimes subtly, sometimes overtly. There has been a lot said about how my son does well when they are 'firm' with him, implying that I'm not. They also tell him to be good for his mummy (in front of me) suggesting that he's acting up only for me. Interestingly though, they aren't as 'firm' as they suggest offering rewards more than simply being 'firm'! Apparently they have told another mother with a more severely autistic child that she isn't firm enough with him!

 

Sounds like the school doesnt get autism at all!

[shaz71]

Sounds like the school doesnt get autism at all!

 

Hi just wanted to say you aren't alone. My daughter who is now 7yr old as gone through all of what you mention, she hasn't a diagnosis although i do think she is on the spectrum but not sure where abouts as there are so much lap over with other learning disabilities it is confusing. She still wets the bed and showing no sign of not doing so ineed to go to gp. She also is struggling with reading writing and basically education in general, her fine motor skills aren't too good either, she is under a speech therapist there is too much going on, she also at younger age used to be a lot worse after school although she was fairly bad going but once there seemed to be ok. She is very anxious in groups and has no self esteem and that is before she gets older........ I am using a lot of positive praise instead of negative which is what was happening before i realised there may be something not quite right. At least you are on the way to a diagnosis i haven't even started i tried but psychologist said it was my parenting skills so see how i go, although funnily enough all my kids have shown similar behaviours but wasn't aware of anything. Sharon x

[AndreaA]

Sounds like the school doesnt get autism at all!

Sounds like I need to get him tested for gluten and dairy tolerance. He has always drunk so much. When I moved him to solids he was terrible. Slight lump would be projectile vomitted across the room. Sometimes out of his nose too which upset me so much. He now won't drink a cup of milk unless it has hot chocolate powder in and won't settle for the cheaper versions either. He knows!!! Breakfast is without milk unless it is Ready Brek. He drinks bottles and bottles of juice during the day and constantly going to the toilet. Gets distressed if he can't have his drink so I don't attempt to cut this down. It is all so daunting and I have a lot to learn.

 

I met a lovely lady yesterday whilst picking up a wristlink off freecycle who has experience working with ASD children. She has told me to get in touch if I need advice too. There are some lovely people around who have been so helpful. Thank you all for your advice. It has helped.

[Sally44]

If your child is having problems with the texture, taste or smell of food, then that could be due to sensory difficulties. Sensory integration disorder, and sensory issues in general are almost always part of an ASD. So if your child is over or undersensitive with his vision (eg. sunlight), hearing, touch, taste, smell, balance and co-ordination - then I would ask for a referal to an Occupational Therapist. There are alot of things they can do to help improve things.

[trekster]

Sounds like I need to get him tested for gluten and dairy tolerance. He has always drunk so much. When I moved him to solids he was terrible. Slight lump would be projectile vomitted across the room. Sometimes out of his nose too which upset me so much. He now won't drink a cup of milk unless it has hot chocolate powder in and won't settle for the cheaper versions either. He knows!!! Breakfast is without milk unless it is Ready Brek. He drinks bottles and bottles of juice during the day and constantly going to the toilet. Gets distressed if he can't have his drink so I don't attempt to cut this down. It is all so daunting and I have a lot to learn.

 

I met a lovely lady yesterday whilst picking up a wristlink off freecycle who has experience working with ASD children. She has told me to get in touch if I need advice too. There are some lovely people around who have been so helpful. Thank you all for your advice. It has helped.

 

We are only happy to help. i didn't get tested for dairy and gluten intolerance, i just went gluten and dairy free and waited to see what happened. He will appear to regress post gf/cf for a short time then things should level off depending on his age and intake. If you removed his chocolate powder then he wont be tempted to drink the milk. Does he sweat buckets? Does he seem hyperactive or zombie like? The gastrointestinal upsets sound like he could benefit from going gluten and dairy free.

 

Ready break could still be gluten but if you remove the milk 1st it will take a few days for the milk and a few months for the gluten. i guess if you watered down his juice he would notice?

 

Good luck and there is a section on diet and vitamins on this site.

 

Alexis

 

[trekster]

If your child is having problems with the texture, taste or smell of food, then that could be due to sensory difficulties. Sensory integration disorder, and sensory issues in general are almost always part of an ASD. So if your child is over or undersensitive with his vision (eg. sunlight), hearing, touch, taste, smell, balance and co-ordination - then I would ask for a referal to an Occupational Therapist. There are alot of things they can do to help improve things.

 

i wish i could get OT support but i think it's unlikely at my age, at least before the autism act comes into place. After 4 years of being gluten and dairy free i was able to eat garden peas without feeling like i was eating grass.

 

Alexis

 

[AndreaA]

Thanks for that. I am lucky(!) we have a occupational speech and language therapist on board now although only seen her once. I have started visual timetable cards which seem to be working. I am keeping a diary too which the nursery are filling in too. I have hopefully found a lovely school for him but we shall see if we are lucky getting him in. It only has 15 to a class so will make the transition a lot easier. I wrote that in the remarks section of the council's app form. I am going to try and push for a statement as in all schools I visited they all advised we went in with one. Not easy but will push for one. Interestingly though of all the schools S visited the one we chose was the only one he cried about when it was time to leave. He didn't want to go. Positive sign!

 

Thanks again.