Feeling sad for DS... starting on the path to a possible ASD dx

[CurrerBell]

I posted here a little while ago after school flagged up some signs of ASD in my DS (he's 5.5, in Reception). We now have an appointment with a paediatrician for an assessment.

This weekend he was being extra sensitive; everything seemed to upset him and everything was wrong. Then yesterday I took him to a football party he'd been invited to. He was excited about it and really wanted to go... But I should have known he'd struggle. He wanted to take part but as soon as he saw the other kids on the pitch he said he just couldn't - he just stood by my side with his face turned into me, looking tearful. Looking at all the other noisy 6 year old boys, it kind of hit me that this is real - he is different and I don't know how much he will struggle in the future.

DH was away this weekend; when he got back I told him how drained and sad I felt. I said the weekend had just confirmed for me that we need to fight for a diagnosis. He said not to focus too much on it and not to get my hopes up, as it may come to nothing... and also that I do tend to get obsessed with things, and by making this my new 'hobby' (researching Aspergers, etc) I might be heading for a fall.

Well, thanks DH!

I just want to wrap DS up and protect him from the world... :-(

Hi CurrerBell,
We all do! But there will be time when our DSs will have to protect them themselves. So for now, your job is to do as much you can and you think you should do to preper your DS for it.
If you think having a diagnosis will help you to understand - do it. Having it it is helpful when you need to talk to LEA and other people. So find EP, OT and SALT and get all you need to help your little men.
About your DH, and comments about obsession and hobby, don't let this to get into your head. As much as we love our DHs, most of the time they are choosing to live in denial for some time. Mine DH was like that for good three years, before not long ago coming to me and crying on my arm and thanking me for not giving up on his child.
You can not afford to fall!
If you need any names and clinics that I found extremely(!) helpful PM me and I will be happy to share it with you.
Head up!

Hi - you are pretty much where I was last year, so I have much sympathy.
Will write again when I've thought more about what to say!

When's your appt, Currer? Don't forget to get all your concerns down in writing, before you go so you don't forget any while at the appt. I always used to get emotional and forget all sorts of stuff, so writing it down was essential. Lots of luck, it's the worst time, in a way, when you aren't sure and you don't want that last bit of hope extinguished. But getting a DX or not, hopefully you'll get some answers as to why your DS is different, and then you are on the road to helping him cope with everything.

My dh was totally and utterly unsupportive when my son had blatent speech issues and a subsequent dx of a speech disorder, so i can relate to how you feel :(. It was, like you, only me that knew there was a problem. He had his head in the sand and thought i was over reacting.

I should have kept a diary of everything really, dates, appointments, progress, non progress, just to support me and my son, if nothing else

I hope you are feeling a bit better today? Sorry i dont have anything helpful to write but i know how you feel. I am not really a huggy person but have one!!

CB I have very recently been in this position with my DS and understand how emotional it can be. What the assessment will give you, as many people on the SN boards will point out, is a signpost and a sense of where you can focus your attentions (useful for the teachers and everyone else, too).

What you said about how the football party made you think about how that situation appears to your son struck a chord, too. What a diagnosis of HFA has made me think about, is all kinds of sensory issues that can be easily overlooked but are absolutely crucial to understanding how DS experiences the world. This means that I, and the school are better able to help (and, if need be, protect) him.

'Tis bloody hard, though, and more stressy than I thought it would be.

currerbell good luck. Our DS is nearly 3 and going through assessment for HFA as well. It's a horribly stressful time but hopefully getting a dx will let you move on from worrying about what's going on to focusing on what you can do. That's my theory anyway...

Btw my DH absolutely hates me looking up anything to do with autism, because he thinks it's fuelling my fears for the future. What he cannot see if that it's the behaviour of DS that's causing my worries (concerns he absolutely does not share to the same degree as I do, and will only believe it when he hears it from a so-called expert). I would much rather go into this assessment with a clearer understanding of HFA and what we can do to maximise DS's chances of leading a "normal" life.

It's a source of huge tension - he reacts like I've got it in for DS every time I mention something he's done (or not done) vs his peers. He spent a good year finding alternative explanations for everything. I just wish he was right.

Thanks so much for all the responses - the appointment is in a month's time. DS is getting on ok at school generally and he does have friends, so I wonder if his problems may be seen as too mild for a diagnosis. But the problems cause us so much stress. I am also noticing problems emerging in different ways as he gets older - he used to be more defiant and disruptive in group situations, but is now becoming more anxious and withdrawn.

I think DH means to be supportive, but it comes out a bit wrong... I try not to take it to heart! Perhaps part of it is denial. He can certainly switch off his worries a lot more easily than I can. It didn't help that I was feeling extra sensitive this weekend as we had family staying, so I had to meet a lot of people's needs as well as dealing with DS's freak-outs!

I have written a two-page history of DS's issues... I have also been reading a lot about Asperger's and PDA as I want to understand as much as I can. I suppose DH thinks I am jumping to conclusions rather than keeping an open mind - although he does agree that DS ticks a lot of the boxes.

There is just so much to think about... Now I am wondering what to say to DS when we go to the appointment. I don't want to worry him...

currerbell bless, you obviously really want to protect him and not project your worries on to him. At least if you've written it all out it might help avoid going over it all again at the appointment - are you able to send everything over in advance? I really hope it all goes well for you.

We are going through the same with our DS (5.8). He had his paed appointment on Friday and she is pretty sure he has HFA or aspergers (one final assessment to come before diagnosis)

Feeling really sad - it's now getting so obvious, he's different. he's even starting to look autistic - odd body language, strange movements, arms flailing all over the place.

To make matters worse we have had a letter from the school today to say that there are problems with his vision :(

It's so hard... I really need DH to be supportive right now, but he just seems oblivious. We have been sent a load of paperwork to fill out (we have to send it back before the appointment). I started looking at it last night with DH. He then had a go at me because I answered 'yes' to the question about sensitivity to noise. DS sometimes finds things too noisy and puts his hands over his ears. DH maintains he doesn't do this - it isn't a problem. I said it isn't a big problem, but he does do it occasionally. DH said I am being too literal in answering the questions and overly critical of DS. I said I am being honest. Argh.

This very morning in the shower, DS was putting his hands over his ears and saying the water was too noisy. Sigh.

Sorry for the rant! I just hope DH can be supportive at the appointment. I'm starting to doubt myself now and think maybe I'm making too much of DS's 'oddities'.

asdevil - sorry to hear about your DS's problems. It is so hard when the problems are still emerging to know what it all means. At least having a diagnosis should help you to get the right support for DS. (Re vision, my DS sometimes says things like 'things won't fit in my eyes'. I don't know if that's a sign...? I think I am seeing signs everywhere right now...)

hi CurrerBell

our DD is 4.9yrs and we are almost at the same stage as you are wrt assessments.

filling in the questionnaires is dire isn't it?

DH and i took 4/5 attempts to sit down and finish ours, it was so tiring and stressful - for us it was like 'dobbing' our DD in. There isn't anywhere to tell whoever is reading your answers all the fabulous things our DCs can do (DD is now teaching herself to read in her head!) - it was frightening for us to do, even though we knew it was to benefit her.

We had a huge row about DH's attitude to appts - our 1st ever (in 8yrs together). He took the stance that the Doctors would make the decisions, they would be able to see what DD was like, i wanted to tell them everything and get it all over and done with.

It was (and still is) tough on us as parents as we DO have to tell it as it is, but at 'it's' worst. Any professional worth his salt (no pun intended) will be able to tease out the most important factors.

If you are your DCs primary carer, you will always notice 'more' - it might help to discuss with DH that the questionnaires are something the Doctors will use to help diagnose your DS, they are part of the jigsaw, not the end?

As for DS and the appt - i recommend calling the clinic and asking if they want DS to be there, they don't always want to see the child straight away, especially if it might be difficult to talk in front of them.

And keep posting and reading - would DH read this section too?

Mine has even joined a fb support group

We had similar problems when filling in the form - DP was adamant that DS does imaginative play, whereas I said that picking up an action figure and repeating something he's heard on Ben 10, does not consitute imaginative play!

DS only puts his hands over his ears occasionally too, so it may not be a big problem, but it still indicates sensitivity to sound

Good morning Currell Bell:)
My DS is similar with noise, he as well covers his ears. It is sensory. He also does not like touching some materials or plants. Read a bit about sensory integration and sensory processing (but don't worry that you are"looking" for things), just helping your DS. More you will understand from his behaviour more easier it will be for you. Believe me. I have got a portable file briefcase with all reports, appointments, letters from different specialists we have seen over past three years and sometimes I go over all of that to see what progress my little star has made. And it is very helpful when you go for your next appointment and they say "sorry we have seem to lost his file". So I keep all the copies at home. Try to organize yourself with all this and then you will free your brain a bit from remembering who said what, and you can focus on finding strengths in your DS.
Sorry to hear about your DH having a go at you for being honest, but at the end of the day it is you who know your child best.
Take care.

Hi Currer - One of the most helpful things said to us when our DS was about 8/9 and at early stages of the assessment carousel, was from an Ed Psych. She could see there were issues, but agreed it wasn't clear-cut and she wasn't there to diagnose anyway; but she suggested we approach problems with DS as though he did have AS. She pointed out that it could well help, and if he didn't turn out to be AS, it wouldn't hurt him! It was very good advice - perhaps your DH might take that way forward with this? It's all about being issue-led; and the fact that my DS did respond to that way of doing things told me more than any label or diagnosis.

As an example, DS was endlessly fiddly, couldn't stop touching things, said he 'couldn't see things unless he felt them'; so in a shop, my DH would twitch and tell him off every time he picked up a (precious, china!) ornament till DS got angry and defiant. Yes, most 9 year olds could control themselves in that situation but he clearly couldn't; so I read up about sensory issues and then tried saying, 'OK, I know you find this hard, perhaps if I look round with you and you keep your hands in your pockets and fiddle with something there, and I'll tell you what's safe to pick up ...' and it worked.
BTW, we had an appointment yesterday and I still couldn't answer those blasted forms and I've been filling them in for nearly seven years now! 'quite a lot ... just a little ...' help!!

Good morning all. DH is being much nicer now! I bought him a little book about ADHD/Austism so he could look at the issues for himself - and he did look at it last night. He said that DS clearly has 'something' and ticks several of the boxes, although we agree that it isn't clear cut. We agreed that by getting the assessment we are doing the best we can for DS in trying to understand him better.

Like you suggested WillowInGloves, I have begun treating DS like he does have ASD and it has really helped.

DS has several of the symptoms of ADHD/Asperger's/PDA - but he isn't consistent. The best way I can define it is that he has episodes of 'overload' when it is impossible to reason with him or get through to him. He is either hyperactive and impulsive, or zones out, or goes into a kind of meltdown where he cries inconsolably. His moods are so changeable.

The strange thing is that, in between these episodes, he is the most grown up, helpful, lovely little boy. He really is like two different children. His teacher can't work him out. She said he is highly intelligent and capable, but also presents himself in some ways that are surprising.

I have begun to read about sensory processing disorder, as I'm wondering if some of the behaviour is sparked off by sensory issues. I can also recognise many of these traits in myself - I am beginning to make sense of why I have always felt 'different'. It's exhausting and feels like the beginning of a long journey for all of us...

Thanks so much for the responses - it is helping so much!

currerbell - this all sounds so familiar - we have an appointment for DS 3.11 next week and i can relate to everything you are saying.

DS definitely has some behaviors that are really odd, can be very sensitive, upset by everything, very routine based - but also a lovely, helpful wonderful child.

DH is also worried that I am "trying to make DS fit into asd" - i am at the stage where I don't know what to hope for - of course I want DS to be OK, but he clearly has something - and I REALLY want to know what it is and start getting him help.

I have also started treating DS as if he has ASD and it has really helped. I recommend NAS Autism Helpline: Tel 0808 800 4104. I have phoned them when we have been having problems with DSs behaviour and their advise has been so helpful (it had got to the stage where DS wouldn't leave the house and now he will!). - someone said to me - take the wisdom - and that is what I am doing, and it helps.

Now I just have to sit here and stress about the appointment next week (DH is going to stay at home with DS2 and a friend is coming to hte appointment with DS and i so that she can sit with him outside the room and I can talk freely to the doc)

Bumptious - thanks for the link to the NAS helpline - and good luck for your appointment next week. It sounds like a good idea to have your friend there with DS so you can talk freely to the doc. Let us know how it goes? I don't really know what happens at these appointments or what to expect... I am worried about my DS feeling like we are talking about him. l am also hoping my DH won't take over or contradict what I say!

I have just had my mum on the phone and she also seems to think I am trying to 'fit DS into ASD' too, so that has made me feel a bit down.

Anyway treating DS like he has got ASD is helping. I have just ordered a 'scheduling and communication' book from ebay - with moveable pictures and velcro. I'm hoping it will help DS as we have a nightmare with him in the mornings and at bedtimes (mostly related to getting dressed/undressed). Also some sand timers (which he is very excited about!) for timing activities.