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Sons with ASD? Advice needed please.

(24 Posts)
bedelia Sat 01-Nov-14 19:56:27

Reposted here as advised the other forum was a little quiet.

I'm really concerned that my two sons (aged 18 and 3) may show signs of ASD. I've always known they're both a little "different", though recent events have made me do some research to address certain issues and I really need advice on how to proceed.

DS1 struggled all the way through school. Around age 6-7 he has many assessments for ASD, dyslexia, dysbraxia, etc. Though he scored in some areas, I was told he didn't score highly enough in any one particular area to qualify for SEN. Luckily he had wonderful support at primary, and his special needs teacher offered to work with him voluntarily. By secondary school, he got a statement for help with maths and english. After school he's attended college (again, with extra help). Unfortunately, things haven't been good for him recently. He's been diagnosed with depression and social anxiety and is currently having counselling. ASD hasn't been mentioned since early primary school, though he has a great many "quirks" which I'd attributed to his personality as consultants seemed to have ruled everything else out.

DS2 started nursery in September, just before his 3rd birthday. I wasn't worried at first, he has his quirks and is a little tasmanian devil though he seemed to settle well. After a few weeks his key worker (the nursery manager) suggested we have a meeting to discuss his progress and explained that she has concerns about his development.

At nursery, DS2 does not talk. This came as a big shock: at home, he's a little chatterbox! No language delays, a wide vocabulary, uses long sentences... If anything I'd have said he was bright for his age! He prefers to play alone; fixates on objects (previously cars, now coins/keys) which he wants to hold all the time and becomes very distressed when we suggest he puts them down. At home, he prefers to play with me or his siblings rather than alone, and I knew about the quirks with his "favourite things" but hadn't seen this as a problem.

We monitored things for a few more weeks, during which time he began with odd tantrums both at home and nursery, particularly when being coaxed away from whatever he's enjoying. We agreed on referrals to "Speech and language" and "Social and behavioural" services which should take around 8 weeks as he'll probably need help integrating when he starts FS1 after Christmas (when class size will increase from 12 to 39!).

DS2's key worker has not mentioned ASD (or any other "cause" for his behaviour) at all, and I refrained from googling for ages as I was concerned that self-diagnosis might lead me down the wrong path. A few times, his key worker has mentioned that he HAS maintained eye contact during his episodes, which struck me as odd as I didn't know what this meant. So eventually I researched online and began to realise several symptoms of ASD (possibly aspergers?) in both of my sons.

DS2 has several quirks which haven't been mentioned at nursery yet. His aunt commented on his "odd way of talking"; he has a fear of particular noises (hoover, hand-dryers, loud car engines) and hates the sensation of certain textures on his skin. He hates change, both in routine and in surroundings (moving furniture around, for example). He hates to have anything sticky on his hands, and has absolutely no fear of danger (runs out into the road, for example). I'm always on edge about him hurting himself, but when he does fall over he rarely ever cries.

I'm not scared that my boys are "different" or may have ASD traits, but am very concerned about getting help for them both.

DS1's depression has me very worried. If he does have undiagnosed issues, I'm sure it will help for these to be acknowledged in order to tailor his recovery.

With DS2, I'm really anxious that he should have the support he needs ASAP, before he starts school.

I also have a daughter (aged 9). She's very bright and no concerns have been raised about her development in any way. The school she attends (to which DS2's nursery is attached) is not a great one and has limited resources. We live in what might be called a "socially deprived" area, so a large percentage of the pupils receive free school meals and class sizes are larger than average. Long story short, we don't have a choice about where we live and which school my children attend, but I'm concerned that their needs may not be met as fully as could be in a better equipped school.

If DS2 does have ASD or other needs, I really want to make sure he has support. Is ASD something which could be diagnosed through the educational referrals? Should I raise concerns with DS's GP or health visitor in addition to nursery to request tests or further referrals?

DS1 has appointments with his counsellor and doctor next week. I haven't specifically told DS that I wonder about ASD and am considering either telling him (so he can bring it up himself) or going with him if he says it's ok.

Apologies for the long post. I'd really appreciate any advice on how to proceed with both of my sons to ensure they both get the help they need.

PolterGhoul Sat 01-Nov-14 20:13:53

Message withdrawn at poster's request.

adrianna22 Sat 01-Nov-14 20:28:21

Thanks for coming on the special needs board.

Ok.

Regarding your DS, 2, regarding his language, it's normal for a child to be quiet, timid at a school setting but is back to their old selves when they get home.

But then there's things like selective mutism-- which I don't want to talk about to get you worried.

When or if your DS,2, gets assessed for ASD, they will be looking at/ mainly his social communication, interaction and restrictive behaviours.

When you said your DS talk loads, How is his talking? Does he copy sounds or phrases in an odd way eg. If you ask him- " Do you want a carrot?", would he be able to give you a yes or no answer or will just automatically copy your question?

Does he use joint attention? Does he initiate? Is he able to requests for things or have a little conversation with you?

The playing and the sensory is odd- but could be normal.

Definitely see the speech therapists and voice your concerns. For the sensory issues, get your son referred to the occupational therapist yo help with that.

I also HIGHLy recommend that you look on this site "www.teachmetotalk.com". She has an intensive list of suggestions and videos for parents to do to help their toddler talk/communicate. She has her own podcast (radio shows on iTunes) that talks about many topics? Including autism/ knowing the signs.. Communication etc.

Regrading your older son, it's a hard one. You can get your son referred to be assessed for ASD, but at 18-- I don't know if many clinics assess teens at that age. Have you looked into getting a private educational psychologist report? The charity ICAN (google ICAN the charity) offer parents assessments. But I reckoned you do this ASAP as your son is 18. If not, you can look at others.

It sounds like your older son may have an undiagnosed learning disability.

Don't worry too much and I hope you find my suggestions useful. smile

bedelia Sat 01-Nov-14 21:54:10

Polterghoul - Thanks for the clarification about going through the doctors for possible diagnosis =) I'll make an appointment for my 3 y/o next week (hopefully with the same GP as my eldest son is seeing as he's been so helpful to date).

I'm beginning to think it might be a good idea to write a list of "concerns"/traits I'm wondering about. There's lots of things I hadn't really considered before.

adrianna22 - Lots of helpful info, thank you! Admittedly I have looked at a few articles about selective mutism, and doubt my youngest fits that well - he loves going to nursery, his key-worker says he seems very happy there and is not concerned about shyness or anxiety (though I realise this could still apply). There are other situations than nursery where he chooses not to talk depending on who is there.

One thing I've really noticed is that his voice doesn't rise and fall - it always seems to be at the same pitch. Yes, he often parrots when I'm asking a question: if I ask "do you want a drink" he'll either say "want a drink" if he does, or be silent/make a noise if he doesn't. Occasionally he will say "no" (if it's a strong, definite "no") but never says "yes". He really wants me to copy him. For example, he might point out "it's a big yellow bus" and I could say "yes, it is". He'll repeat the phrase again, and again until I repeat what he's originally said. He's okay if I enhance it ("yes, that's a big yellow bus with lots of wheels") but gets very frustrated if I don't repeat his words.

He initiates often with me, his siblings and others he is close to, though I'm told this is very rare at nursery. Requests all the time using words and can be very specific (e.g. want a milkshake in cup with straw). We have frequent conversations (so long as I play along with repeating his words when required). Sorry I'm not sure what you mean by "joint attention".

My eldest has many odd quirks which I haven't properly detailed. For example, he'll only allow me to cook/prepare his food - no-one else is even allowed to touch it; he'll only eat certain foods (for a while aged 4-7, he would only eat white foods, though this has calmed down now he's older); he has a phobia of nuts, or anything which resembles the shape of a nut (such as olives, grapes, chickpeas). He used to rock back and forth, or jump around when playing, though again this has calmed now he's older. Clear, simple instructions are needed for him to understand how to do anything. Social interaction (even with me, and we're very close) can be awkward as he'll talk for hours about what interests him (cats, science or videogames) and be oblivious to the needs or wants of others.

I'll begin looking into ICAN now, thanks for the advice =)

PolterGhoul Sat 01-Nov-14 22:03:09

Message withdrawn at poster's request.

bedelia Sat 01-Nov-14 23:11:12

Have reserved "Kids in the syndrome mix" through the library (so glad it's available!). Thanks so much for the recommendation!

I've talked with DS1 in a roundabout way. He gets very anxious about things (persuading him to visit the doctors about his depression was a massive step!) and I don't want him to be worried that there might be something "wrong" with him. Luckily he recognises and questions certain things, especially as my younger son's oddities have been brought to light. I have a feeling he might ask me to go with him and explain certain things at his next doctor's appointment as he's unsure how to explain for himself.

Something I spotted on another website regarding DS2 has niggled me - mention of "bowel problems" in relation to childhood ASD. Since birth, DS2 has only pooped once or twice a week. Initially we put it down to him being premature and breastfed, though he's now three, still only poops every 5-7 days has a big round belly. It doesn't seem to make him uncomfortable, so I was going to bring it up the next time he sees the doctor or HV, now wondering if it's at all relevant?

zzzzz Sat 01-Nov-14 23:38:31

ASD is NOT something wrong with you! any more than a photographic memory or colourblindness is. It does however come with some pretty heavy risks for depression and social difficulty in older teens/adulthood. Unsupported or clumsily supported i think it is a worry. Certainly protecting my ds's mental health is at the forefront of my mind.

I liked the book "send in the Idiots" not least because the writer, so obviously is functioning and thoughtful and has ASD.

adrianna22 Sun 02-Nov-14 04:02:40

Hmmmm-- it's very hard to say.

To be honest, there are many disorders that resemble autism symptoms. So I would mainly concentrate on getting his needs met.

Though, even though your son is saying a vast amount, he does seem to have some delays in his understanding. The site teachmetotalk- the speech therapist has her own resources that you can buy-- I have brought three other DVDS- the DVD 'Teach me to listen and obey' would be of use for you as it tackles understanding, attention and listening skills.

Borrow, or get the book "More than just words" by Hanen. ( It is expensive to buy though, but is worth it!).

Joint attention is when-- kind of like what you mentioned, your son pointing at the yellow bus. But yeah, if you go on the site like I mentioned above (www.teachmetotalk.com) she has great detail about it. I think they are levels of joint attention i.e. a first a child attending to you, so you are both reading a book, shared attention etc.

Though, many therapists want to see this type of joint attention eg. A child looking at an object, pointing (or not) then looking at you then back to an object and to also see a child respond to imitation of Joint attention.

If you have any other questions free to PM me.

zzzzz Sun 02-Nov-14 15:58:12

Your description of his talking pattern sound very classic selective mutism. I'm sure you can read the criteria and judge though. It is a relatively common co-morbid of ASD.

adrianna22 Sun 02-Nov-14 16:53:47

zzzz- I know that autism and selective mutism go together. But many health professionals say that you can't be diagnosed with autism and selective mutism.

zzzzz Sun 02-Nov-14 17:22:50

That isn't my experience adrianna.

zzzzz Sun 02-Nov-14 17:29:19

I think that's idiotic. You might just as well say you can't diagnose ASD and OCD or ADHD confused

Could you perhaps mean that the dx of ASD would carry more weight/funding?

adrianna22 Sun 02-Nov-14 19:27:35

Yes, I think that's what they exactly meant. They told me something along the lines of ".....the autism is the primary diagnosis and not the SM...".

zzzzz Sun 02-Nov-14 20:39:59

The key difference though is that lots of children beat SM while ASD is more of a live with it thing.

bedelia Sun 02-Nov-14 20:56:59

zzzzz - I totally agree, there's nothing "wrong" about ASD or any other condition! My eldest is really sensitive about his difficulties (being bullied at school really didn't help matters!) so I have to be careful how I phrase things to him. I'm hoping that eventually a diagnosis (or at least professional help to address his problems) might help him to understand things better, though am still concerned it might make him feel "singled out".

I really wish I'd been more aware of ASD and other conditions when he was younger. He was only around 6 or 7 when assessed (he's 18 now), and we were told that he hadn't scored enough in any one particular area for a clear diagnosis. In retrospect, I think he might have been putting on a front at school to try and fit in, particularly at secondary school. Despite being very close, he was able to hide the severity of his depression from me, so I'm well aware he can hide things when he feels he needs to.

I really wish I'd read up about things much sooner rather than accepting the initial diagnoses (or lack thereof). There are so many things I'd put down to "personality quirks" which I'm now certain his teachers weren't aware of (or didn't see as much of as I do) that might have been signals of underlying issues. At least he is now getting help, and hopefully when I raise my concerns with his support network (GP, college tutor and counsellor) we might be able to make progress. I just want him to feel comfortable in his own skin.

zzzzz Sun 02-Nov-14 21:00:57

It's totally different dealing with your adult ds and his self image than your younger. In some ways exploring ds2's difficulties might give you a platform to talk about it.

PolterGoose Sun 02-Nov-14 21:02:07

Message withdrawn at poster's request.

bedelia Mon 03-Nov-14 10:12:01

Thank you all for your support and advice, I really appreciate it =)

Just had a quick chat with DS2's key worker at nursery about things. She's already sent off the referral to Early Years Inclusion and explained everything to me, though said (as I expected) that she wouldn't be able to diagnose anything herself, but feels DS should have access to support as we head towards school age. I'm so glad DS attends this nursery, his key worker is so supportive and helpful!

I do still feel the need to talk to our GP (if only to mention these concerns and address DS's infrequent bowel movements). Should I also push for assessment through the doctor, or would it be enough to explain the referrals happening through nursery? I'm adamant to make sure any support that might be needed is in place, but wonder if this might complicate or delay any progress?

zzzzz Mon 03-Nov-14 10:17:04

Definitely go to the GP and ask for referal. Though there is cross over between health and education it's a bit ropey and it's worth giving a firm steer towards medical assessment. It's never a great idea to rely on other people to refer you, because they may have a totally different end in mind (ie funding rather than diagnosis).
Ask for a copy of all referal/correspondence from nursery and to be sent copies of all future stuff. (This is normal not snoopy and your "file" needs to be as comprehensive as possible --and it lets you see what's going on--)

Tambaboy Mon 03-Nov-14 12:18:32

bedelia certainly go to your GP. DS was referred to the Early Years team when he was in Nursery and there were more about giving the nursery extra funding to support DS rather than referring him to professionals to seek a diagnosis. It was DS' s SALT who eventually referred him to paediatrician.

troutsprout Mon 03-Nov-14 13:39:50

Hi Bedelia ... Your post really struck me... Both boys sound like a description of my ds... A description of him at 3 and also a description of him now at 17 1/2.
The only difference is that we haven't had depression (Yet... <<Touches wood all around>>)
Your poor lad... Sounds like he's having a rough time sad
Ds was strung along ( just lazy/ naughty/ doesn't listen / wasnt autistic enough apparently) having a horrible time a primary school before I managed to get a referral and he finally got a dx of aspergers/ high functioning autism and dyspraxia just before going to secondary school.
The dx has been hugely positive. He was JUST getting to the stage where he was starting to turn things in on himself- " I do these things because I am a bad person" ...rather than " I do these things because I have autism"
This is what the dx gave him- the ability to separate it off.
I think it was that first step to knowing himself and perhaps liking himself
Can you use your younger sons investigations as a way to research with your elder son? Can you get him to look at stuff online with you? Does he recognise traits?

bedelia Tue 04-Nov-14 10:39:53

Troutspout, I'm so happy to hear that the dx had such a positive impact for your son =) Out of curiosity, did you have to push for the referral for your son yourself or was this through one of the professionals working with him through school?

Your mention of "turning things in on himself" is so familiar! I can't help thinking that if I'd been aware of certain traits earlier and pushed for a referral it would have made a massive difference. As DS said himself though, we're doing this now, and he's already beginning to feel a bit more positive.

Thanks for the suggestions in using DS2's investigations to broach the subject with my older son. DS1 and I had a good long chat about things last night (after a few days of bringing up the subject slowly in relation to DS2). I explained what I'd learned about autism spectrum/aspergers and suggested he try a screening quiz I'd found on the Wired website - he scored 36 (and some of his answers were "milder" than I would have thought, as I'm sure he's still trying to mask and feel "normal"). The quiz suggested that 80% of those who had been diagnosed with AS scored 32 or higher. He actually seemed relieved, though I had to explain that it's not a diagnosis, just something to give us an idea about how his mind works.

He's asked if I'll go with him to his next doctors appointment next week (we can't get an appointment any earlier) and he's going to mention it to his counsellor tomorrow. I do want to push for a referral ASAP which I know will take time, though as I explained it is very important to address his depression right now and look at any possible dx in the long term as it won't be a quick fix.

DS2 has an appointment with our GP for the 18th, a couple of weeks away but plenty of time for me to write a list of concerns and begin keeping a diary. I've also done the M-CHAT-R test (and printed results) for him: he scored 10 (high risk?) though some of the questions were borderline pass/fail as some of his traits have improved since he began nursery. I'm going to keep lots of notes and read up as much as I can for both my boys to make sure we're taken seriously =)

troutsprout Tue 04-Nov-14 17:11:17

Oh I am glad your d's is feeling more positive .smile
He's right... You are absolutely banned from thinking " what if" or " if only I'd ".. We all do it ... But that way lies madness .
It only matters what you are doing NOW and what you plan to do with your future smile

I had to push for a dx myself and went to a gp. I dropped lucky the third time and saw a Different gp who was willing to admit she knew very little about it but felt that I DID know what I was talking about. Enough to get a referral anyway.
He was was referred to CAMHS and got a dx

You sound like you are taking some really positive steps with your boys smile
I would recommend that you also jot down some notes about your elder boy and what he was like in toddlerhood as if he is referred they will likely ask what he was like when he was younger

Good luck Bedelia x

bedelia Wed 19-Nov-14 10:54:21

Just a quick update. My eldest (DS1) saw his doctor last week, mostly to discuss his depression - which is slowly but surely improving - though we mentioned about the possible ASD traits in both him and my youngest. Doc explained that the best approach now is to make sure he's getting the support he needs, and suggested asking for referral to ed. psych through his college first to support him there If that's not possible he'll explore the routes for possible diagnosis and support, though it might not be as effective at supporting DS in his course. I do agree with this, my biggest concern at the moment is DS's depression, though down the line he might want to have a diagnosis.

DS2 has been making some progress at nursery. He's begun talking to his teachers a little (occasionally other children too!) and learning a little more about what's expected of him (putting coat on and taking it off by himself, less tantrums during transitions between activities, etc). Both at nursery and at home, we're using Happy/Sad face visuals to try and reinforce good/bad behaviour, though I'm not quite sure he yet understands the difference between them. Still, it's early days yet.

Yesterday, we had the appointment with his GP (a different one than DS1 is seeing), and can't help feeling a teeny bit "fobbed off". After extensive reading about ASD and related diagnoses, I wrote out a big list of his traits with examples, explained a little about my (and nursery's) concerns and gave her the list. She said that while he had several autistic traits (I didn't mention the term myself), he is "only just 3 years old", and that a lot of these traits are common in children of his age. That it's normal for children to have attachments to things, favourite toys or teddies - he's currently obsessed with keys and disc-shaped things like buttons and coins, insists on carrying 3 of these things, has to try a key in every single lock (or small opening) that he sees. Anyway, she's not in a rush to refer him, particularly as DS's key worker at nursery has initiated referrals for S&L and Social/Behavioural for possible support. I got the impression of "wait and see if the experts flag anything up" as she said we should make an appointment to see her again once those have happened.

I also asked for help with DS's bowel problems - he only poops once or twice a week (and has been very uncomfortable with it for the past couple of times). I'd wondered if this might be related to the other issues (he's a fussy eater, and I've also seen mention of bowel problems in ASD children) though she explained that lots of people poop less frequently, she's not worried about it and gave him a mild laxative for when he's having trouble. Personally I think there might be more to it than that. I'm sure laxatives will help, but won't address the issue in the long-term. Does anyone else have children who poop so infrequently? I'd appreciate some reassurance!

Ultimately, I need to make sure DS2 gets any help he might need ASAP, particularly as he's moving up to "foundation stage" at nursery after Xmas so having S&L, B&S referrals through nursery is a good start. If they do suspect ASD, will they be able to refer him on/diagnose this, or will I have to go back to the GP again and really push for it?

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