new, not yet diagnosed but being assessed- stressed!

Hi

A lot of what you describe sounds like some of my son's behaviour. He is 7 and has very recently been diagnosed with high functioning ASD. I too have the "perfect" daughter and was also told it's just a boy thing. What a load of ballocks. Believe in your self. I have known there was something different since he was 2. He was reffered to a paedetrician at 2 and they referred him to CAHMS at 5. This is a long process guys but keep at it for your peace of mind. Diagnosis changes nothing with your child though they are still wonderful but you finally have the understanding of this is why they behave this way and this will help you to help them. I had all the comments, just ignore them or tell them to mind there own business. There is proably still many undiagnosed children due to being "just a boy" or "shy" so you are doing what is right

I think that people always assume that mum is worrying too much and try reassurance first. If you persevere calmly, eventually people may listen more. As you say, you first raised the issue when you were emotional due to pregnancy. That may explain why some people have been dismissive. It is difficult to get over this barrier, but you sound very calm now, so you could just persue this with those who are prepared to listen. Some relatives may not want to believe he has problems. It is hard to take these things on board, especially for older family members.

Best wishes

Thankfully bedtime isn't much of a trouble for us. If he has a meltdown before bedtime it can delay it. But when he is calm it's PJ s, teeth, story, sleep. Sometimes he chats to his teddy for a bit and goes on his own accord. That said, 6am is a lie in and he is up often around 4am. 

D is also very selective who he meltdowns with. if myself and his Dad are present it can be anywhere at anytime. If he is alone with his grandparents or teacher he doesn't react in the same way. It's like he is a bottle of pop that gets shuck a little bit all day then when he gets home (not always that far sometimes the playground), it's shook once too much and the lid pops off. That's quite common though from what I have read. 

What support have you asked about for your son?

my boy has meltdowns as well- they can be triggered by absolutely anything and he goes mad.  he's a bit jekyll and hyde- he can be completely calm one minute then just takes something to happen and he kicks screams, tells me he doesn't want a mummy anymore, etc.  it can be really hurtful.  then afterwards when he's calmed down he is the loveliest child again.  for example we were driving home from school and i always bring a snack for on the way home.  he said he wanted an apple which i didn't have, i said we'd be home in 5 mins and i'd get him 1 straight away and he went mad!  was kicking the back of the chair, shouting and screaming, etc.  and i find myself just trying not to do anything that might slightly annoy him.  like all of a sudden he will want absolute silence so me and my 10 year old daughter are not allowed to talk- i feel bad for my daughter as if she tries to talk he goes mad.  so it's like we are tip toeing around him.

he doesn't like a lot of noise either- won't go to the cinema, etc, no radio in the car, doesn't like hand driers (unless it's one he's interested in and will want to dry his hands for ages).

does your boy struggle to get to sleep?  it takes my boy about 2 hours to get to sleep at night.  i was having to lie with him but have had to stop doing that because it eats into the time i can spend 1-1 with my daughter.  so i just hear him talking and singing for ages.  he calls me and people say to just leave him but if i do he just has a meltdown and it then takes even longer for him to fall asleep.

sometimes i think he is just 'playing me' as he's so quiet when his grandparents, etc have him and only really has the meltdowns with me, but i really try to be firm and consistent.

I took a diary of behaviour and a list of my concerns and we were referred within 5 minutes. She expressed concerns about D's age (just turned 4 in Feb), I explained that I had the conversation about delayed speech when I requested a SALT referral at 2. I explained that I wanted early intervention and she agreed that there were definite signs of ASD. I called on Monday to check how long the turnaround was and the referral had already been sent, expecting to be seen within 18 weeks. 

I've noted what I think to be meltdown triggers since seeing the GP & update his behaviour diary daily. We have days where he is golden and I question myself. Then I have the last 5 and think there has to be something. I spend my days so fraught and guilty. My youngest son (2 next week), thankfully is mostly an angel but I don't get to spend as much 121 time with him as I'd like. We were playing shops this AM and it lasted all of 5 minutes before it became too much for D & we had a meltdown. So poor J tides it away while I calmed D down. 

Balance is do hard!

thanks for the reply autumnleaves, I've just read your post and it sounds very similar in parts.  did your GP refer you straight away or did you have to go back a few times?

Hi. My son has just turned 4 and I've written a very similar post. You are not at all alone. Our GP has referred us so now we wait to hear from a pediatrician, hopefully sooner rather than later, to start the ball rolling. As you say, if he turns out to be fine - fantastic. If not then we potentially open doors to receive extra help and support where necessary. 

Good luck 

Of course, you can have a child with autism and hypochondria ;-)

thanks to you both- nice to have some support rather than being brushed off as being a hyperchondriac!! 

Having autism isn't the end of the world by any means! I managed 56 years without needing a diagnosis but looking back, I was a shy and awkward child and can remember incidents throughout my life that make more sense with the aid of a diagnosis. Many (most?) of the greatest scientists were autistic - awkward, doggedly determined, thinking differently, socially inept but valuable members of society nevertheless.

Whichever way he turns out - try and understand him and work "with the grain" rather than trying to make him conform to some idea of normality that may not suit him.

The bit that jumped out at me was the repeated warnings - apparently my mum did the exact same thing with me before the possibility of Asperger's had even crossed her mind. It was the only way she could reduce my anxiety of something being about to happen, such as my time on the computer ending.

I would also get very angry when I was a child, although now it's an emotion I prefer to ignore and so getting me anything more than mildly irritated is quite difficult. The thing to remember that there will nearly always be a reason why. What would be little things to anyone else are enormous to us. My guinea pigs don't know that the teaspoon someone drops in the kitchen is nothing to be alarmed about, and I see my own experiences as a simlar thing. We have to be on the lookout for threats, and when we see one, something MUST be done about it NOW in order for us to feel safe, and that's where our poor, perplexed parents come in. :) That, I believe, is why we get angry or in some cases aggressive at 'little' things. I think we're essentially animals in human bodies.

I hope I've given you a bit of insight into our world, and reassured you that you're not just a neurotic mother like some people would have you believe. :)

thank you so much for the reply.  i've had a look around the site and is very helpful.  i suppose i just want to know either way.  if he isn't- fantastic, if he is, then at least i can get some support and help him and also explain in a way the reasons why he's like he is.  he's just such a lovely boy.

Hi Clara,

you are welcome to post - there are no strict criteria for entry. Welcome :-)

You have picked out a few items that sound as though they could well be autism related - his difficulty with new people, his anger, his inability to cope with change etc etc. It is common for people to think of it as he's just a boy but actually it may well not be so I think you should follow this up if it is causing him to have real problems at school. People do tend to make comments and suggest that you are just being over protective or sensitive - this is a common problem for parents on the forum - don't react, don't get angry - there's no point.

Have a read of some of the other threads on the forum - I expect that you will find familiar subjects that will make you feel as though you are not alone with having a boy like this (some of it sounds like me when I was little - a long time ago now). The forum covers a range of children and adults of both genders with lesser or greater issues (I managed without a diagnosis until I was 56!) don't be discouraged or distressed by some of the stories - there is an enormous range of impact of the condition.