My son's diagnosis (ASD) - feeling glum and helpless

[catski]

I'm not a regular poster but many of you have been kind enough to impart your knowledge with me in the past and I thought I'd update you with the diagnosis we got for my son today.

(Brief background - I became concerned around 16 months when I realised he wasn't pointing or doing much else in terms of non verbal communication. I carried out the M-CHAT test at home which he failed, had him 'Sunderlanded' at 17 months, the results of which were a little ambiguous and have had him on a milk free and low gluten diet over the last few months. He's now 22 months).

We had him assessed here in sweden where we live (my son's father is swedish) at the children's nueropsychiatric unit which is headed up by Christopher Gillberg. Although we were unable to see Gillberg as he travels so much we saw people who have worked alongside him for years, and those trained by him so felt we were in safe hands for a dianosis.

He was assessed when he was around 19/20 months and they have concluded that (at that age) he has very mild autism and will refer him on for therapy.

Feeling pretty bad, although I know I shouldn't because the diagnosis is 'mild'. I suppose I was hoping that they would come back and tell me that there was nothing wrong with him and that I was being ridiculous (as most of my RL friends have done), so I suppose it's still a bit of a shock and it's all quite raw. Also feeling a bit lost in terms of where we go now. It feels like all the impetus I had in getting to this stage disappeared during the course of our meeting today. The unit which has evaluated him are not the same people who will give him therapy so that's an unknown territory and I'm not sure how comprehensive that therapy will be (it differs from region to region). I have a sinking feeling....we live out in the sticks and I'm not hopeful that the 'habilitering' centre (don't know what the UK equivalent of that is) we'll be assigned to will have the resources or people with the knowledge to give us much help.

I feel like I need a plan of action, the sooner the better. It's going to be about a month before our habilitering centre even get involved and I am frustrated as I want to act now as from what I understand early intervention (and the quality of it) is essential for a better prognosis.

I'm really sorry for the moan. I just can't talk to anyone in real life at the moment.

[silverfrog]

Hi, I am sorry you are feeling down.

Well done for picking up on the signs so early (sorry, that sounds patronising, and I don't mean it to). It is great that you have done so.

From the point of vew of doing something to help your ds, I would recommend looking at Floortime

I did an online conference of their's last year, which was very helpful, and I thik there is another one coming up. It is all about how to get your child involved in playing, with small everyday steps that can help make a difference. there are also a couple of workshops on meltdowns and sensory issues.

[Shells]

Just wanted to send my thoughts. I know what you mean about not being able to talk to anyone in RL. And its so all-consuming that you feel very isolated.
As you say, he's very young. And that is good, as gives you time to get things arranged and also to do reading yourself and find out whats important and how your system works.
Hang in there.

[drlove8]

hey, you deserve a hug

[jabberwocky]

catski, I'm sorry you are feeling helpless. I see silverfrog has already posted a floortime therapy link and that is an excellent place to start. You are already doing the diet so a big step done there. This does not have to be the catastrophic diagnosis that we as parents once thought it was. Occupational therapy, vision therapy, sensory integration and nutritional supplements can all make such a huge difference. Pat yourself on the back for being pro-active and getting a diagnosis at a young age. That can be very helpful when trying to get various services.

Ken Bock's book Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies is also very inspiring.

[amber32002]

Things that can help from day one:

Notice what we find difficult - sensory things? Light, sound, texture. Routine changes? Eye contact? Social events? Turn taking?

Our lives are made hugely easier by knowing what's expected of us, and when it will happen. If you can get used to giving us warning of what's ahead (pictures work better than words), and help us avoid environments that have flickering lights, lots of background noise, lots of people trying to be social with us all at once, those will help a lot.

A safe corner, something to wrap ourselves in to 'cancel out' any sensory overload (duvet?), a favourite toy or hobby - they all help.

And watch for what we may be able to do really well. Build on the skills we may have - they can be remarkable and give us an 'entry' into society even if our social skills will never be first-rate.

[cyberseraphim]

I think autism services are good in Sweden so don't give up hope at the start. What do they/you think are his main problems ? What do you feel you need to focus on to improve his communication?

[catski]

Thanks for your replies and the links. I have looked at the floortime sites and am also part way through one of Dr Greenspan's books and must admit that I don't really 'get' it. It just looks like playing....I think I'm not very good at formulating a program tailored to us from a great big book so will sign up for the online course which looks great - thanks for the heads up. Has anyone been in touch with any of the DIR professionals in the UK and found them useful? I saw on the site they don't have any in sweden so was wondering if it's feasible to employ the services of one of them with a view to setting up a home program for us.

I think expressive speech seems to be the area which is immediately obvious, although he hasn't developed non verbal communication to compensate for lack of speech either. His receptive language seems to be ok.

They also thought his reciprocal social interaction and imaginative play was limited. Although his eye contact and interaction is pretty good with us, with strangers it is much more limited. Imaginative play is more learned than spontaneous at the moment and rather limited.

I must say I haven't seen any signs of sensory processing difficulties so far. Sleep is fine, as is eating although he's slow to warm up to new foods (and new experiences in general - in one of the observed play sessions he was very scared of an electronic bunny. Although I must say I wasn't all that keen on it myself!).

I think I need to ask them to put a summary of their findings in writing for me so I can digest it properly. The lead psychiatrist mentioned something about atypical autism (is that the same as PDD-NOS?), or autism-like syndrome, or him being someone who might later be diagnosed as having light aspergers, but said that for the time being and sake of simplicity we could regard him as having mild autism. I don't really know what this means for us and the future - is it going to get worse? better? I feel like his prognosis can be improved only if a lot of intervention is started now, and I'm at a bit of a loss where to start. Feel like I have a mountain to climb and zilch energy. Floortime is good though and is something I can be proactive in. I don't seem to be very good at 'playing' though...don't seem to have the imagination and find myself running out of ideas or things to say.

[TotalChaos]

sorry to post and run but not got much time. even if expected and fought for, it's still upsetting and a shock to get a DX, be kind to yourself, you deserve it, you've done an amazing amount already to catch any problems early.

This website is very informative, in particular about an approach called "verbal behaviour" to help kids with ASD develop language. www.mariposaschool.org/materials.html,
it's got a whole manual you can download!

Or there is an organisation called Hanen (www.hanen.org) that specialises in helping kids with language delay communicate (they have special books and courses for kids with ASD, called "More than Words").

I'm not very knowledgable about ASD, so possibly someone may come onto the thread and say that there is something else better than verbal behaviour/Hanen at your kid's age but thought I would mention them anyway...

[amber32002]

Will it get better or worse? Depends. Some believe that if you put enough therapies etc in place early on, you can 'cure' an ASD. I suspect what you can do is help rewire the brain to work better/help us learn more rules, and that certainly helps us to cope better. But I'm not sure it ever really goes. Until the children who are having these therapies report back on their own experiences when they're older teenagers/adults, I guess it's a lot of guesswork and observation, rather than knowing what it's like for them. We can 'improve' over time simply by learning a lot, even without therapies, so there's much yet to investigate.

Generally it won't get worse, no. There'll be good bit and bad bits, and some years are harder work when things like hormones 'kick in'. But there's enough adults with an ASD posting on these threads to show that life can be fairly fine for us.

[kettlechip]

hi catski, I remember your posts from a few months back. We chatted about the Sunderland testing at the time.

It must be a real shock to you to have received the diagnosis, much as you may have anticipated it. Try and think of it as being positive that you have a place to start from, and that things will now be put in place to help your ds. Easier said than done, I know.

There is a great book called Playing, Laughing and Learning with children on the autistic spectrum. It's by Julia Moor and is available through Amazon. There are plenty of ideas in there, you can turn any day to day event into a play opportunity - getting your ds to help sort the washing, tidying away toys etc can all be great for encouraging vocabulary development.

Don't put pressure on yourself at this stage or feel bad if you're not spending every minute doing stimulating activities with him. He can and will improve - probably way beyond your expectations, and by diagnosing him so early you're giving him the best start possible.

[jg3kids]

Hi
i'd like to agree with everything the others have said. Also, look at RDI (google connections centre)and the book recommended is great too -- for all kids not just asd!
My son has severe autism (as do my neice and nephew) and to be honest with you all, I was heartbroken when we realised he had it. My neice and nephew were 4 and 11 at the time of my sons birth. They were both non verbal, not potty trained, not sleeping... both very unhappy. BUT they are both doing well now, speaking, communicating and happy.
My son has lots of health issues that we are addressing (unfortunalely the NHS aren't helping. We get told 'it's his autism') and as he's becoming healthier we are seeing better moods, sleep, behaviours, less sensory overload... Like Amber says make it so that he has a comfortable life. We don't drag our son round places, and help him with his routines. He is brilliant with numbers and letters (he may have hyperlexia but that's another story)
So, what i'm waffling about here is that yes, things do get easier.
I absolutely love my son to bits and don't have a problem with his autism anymore (like I said, i did have when first realised he was different) but do want him to have a healthy, happy, pain free life.
Which is what we all want for all our children isn't it?

jx

[cyberseraphim]

I suppose you'll know more when you get it in writing - but did they make a specific DX of anything or was it just an indication that he was likely to have a pervasive developmental disorder ( with an indication that it's mild) ? Is bi lingualism an issue ? Does he follow instructions equally well in both languages?

''although he hasn't developed non verbal communication to compensate for lack of speech either. His receptive language seems to be ok.
''
What would he do if he was desperate to get something? Sorry if I'm asking too many questions !

[catski]

Thank you again - you really are a great source of knowledge and comfort. Still feeling very alone here - mainly because I don't know how to navigate the system so I have to trust my husband who's much more laid back and 'oh he'll be alright, it's only mild' which isn't instilling me with confidence. My understanding is that the earlier and more intensive the intervention is, the better chances he has of life being fairly ok and I'm so frustrated with the wait and see approach.

Got a letter today for the meeting between us, the department who diagnosed him, and our regional habilitering centre, which isn't until the end of March. I feel so despondent that if we're not even going to have our initial meeting for a month, then who knows how long it will take to put a 'program' in place and how comprehensive it will be. I feel like I want to act now and use this early time to its advantage.

They didn't really give a specific diagnosis during our meeting (although I'll see when we get the written summary) - the lead doctor seemed unwilling to get into the specifics during the meeting, partly for ease of explanation but also (I think) because of my son's age. He said that they had had to rely somewhat on clinical intuition because of his age, but I know they haven't really had that many children so young being evaluated (he's a good case study for them and he'll be taking part in a research study).

Have ordered the book you suggested kettlechip, it sounds like what I need.

They indicated at the meeting that bilingualism wasn't an issue and we should continue with that cyberseraphim. I think his understanding is better in english than swedish as he's with me most of the time. If he's desperate to get something he will point at it, which actually only really came on when he was ill at the beginning of the year and wanted his sippy cup a lot! But there's no other real gestures - he flaps his arms as to push something away when he doesn't want something (like food), but there's no waving (only very occasionally, if really pressed and if he's in the mood - on his own terms I guess you'd say), nodding/shaking head, putting fingers to mouth to say 'shush' etc. Certainly not asking too many questions by the way - bring em on!

We called yesterday and asked about the possibility of getting a SALT in place, even if it's a private one, and the speech therapist who evaluated him said he's too young......
So what help is he not too young for? What kind of therapies would you think are appropriate or hope for for a 22 month old? I'm researching the floortime approach, but I'm not sure that our habilitering centre will even have heard of it, let alone have anyone qualified and available to assist us with it.

They have suggested that we put him into nursery (at the moment he's home full time with me) and part of the meeting in a month's time will be to discuss which one in the area might best fit his needs (and then there is usually a waiting list of six months for him to get a spot there) . Whilst I think that nursery might have it's benefits I really hope that that's not going to be the full extent of his 'therapy'. It feels like such a postcode lottery.

[cyberseraphim]

The Hanen Program has a lot of advice for parents of pre verbal/non verbal children. I saw in a magazine that there is now a DVD of their program. I'll try to trace the details and post them here. The book 'More Than Words' is great but it has so much advice that it is a bit overwhelming on a first read. I think seeing the ideas in action on a DVD might be better.

[cyberseraphim]

www.hanen.org/web/Home/HanenPrograms/MoreThanWords/MoreThanWordsregResources/tabid/235/Default.aspx

More Than Words DVD - 5 hours of advice ! It's for the parents though not the the kids !

[silverfrog]

the floortime approach is great purely because it is something that will suit a boy tat young, and as you said earlier, in essence it is simply playing.

I felt much as you do when dd1 was diagnosed - didn't want the wait and see, kept asking for help much of which was not given because dd1 was too young.

dd1 was diagnosed 2 years ago now (at just over 2), and the main thing I have learnt is that this is not a sprint race, it is a marathon.

That is not to say there is not stuff you can be doing. I had a similar SALT battle to yours, but we won (although dd1 was 3 by then)

I would really recommend the Hanen books, and Floortime.

If you can get outside help for your ds, then great. If not, then if you can modify the way you speak/play with him, then his "therapy" is still being done. you spend the most time with him, and using that time, in a suportive play way, will be fantastic for him.

Don't underestimate what you can do for your ds just because you are not a professional. when I did the floortime course last year (the online one) I realised that a lot of what Grenspan was advocating I was already doing with my dd1. I tweaked it a little, but the basics were the same. And she responded really well to it, then and now.

[amber32002]

Catski, I've been thinking how to word this, because I want to give you hope rather than a whole new challenge, but please beware of the "it's only mild" stuff.

What people often mean is "hey, they're intelligent and can seem like they're coping - that'll do". It's why most adults with an ASD are in a hell of a state - because people insist on seeing our attempts to cope as evidence that it's only 'mild'.

The sensory stuff, the complete puzzle of being able to work out what people mean when we can't 'see' 90% of their communication (body language, tone of voice, facial expressions), these aren't mild things. They leave us immensely vulnerable, very exhausted, they stop us accessing things you take absolutely for granted. Neither are the problems with balance and fine motor skills, or the challenge of having a brain that wants to work in a very different way (in my case, in pictures, not in words). What they often mean is "hey, these people learn to overcome all of this, as far as we can see". Yes, we do learn to disguise it, but it doesn't go. And neither are people fooled by it, to be honest. The bullies can spot us a mile off.

What changes is the sort of help we need. To achieve our best, we need courses adapted to our brain's way of thinking. We need environments that aren't a sensory nightmare. We need to cope with people one at a time, not all at once. We need to specialise. We need people to be aware that yes, we can look at you and learn enough phrases to make it look like we're listening to you at the same time but actually no we can't do both. It's mimicking your behaviour, not learning it, if you see the difference. It's how I run my life, and it works well enough that I'm married with a child, a lot of friends, a business, and manage the work I do for schools, charities, churches etc. But it's a very different way of being, cleverly disguised, and very tiring if it goes wrong.

What really helps is people respecting us for what we are, rather than trying to make us into exact copies of everyone else. Harmful behaviour certainly needs to be helped. Social skills needs to be learned as best as we can. But otherwise it's like trying to make a cat into a dog. We're not necessarily a broken dog, we're a cat.

If you work out what really needs to change, and what can actually just be done differently, it'll help both of you.

[jabberwocky]

Another one saying that this is a great age for floortime therapy. And to back up what Amber has said, it's never too early to start looking at your son's environment wrt sensory issues. Probably one of the best investments you could make is an indoor swing. Try one out first as vestibular therapy might not be his thing. But most kids love it. Ds1 jumps into it as soon as he hits the front door most days (we have it hung in the playroom). There are all sorts of things to try and lots of information out there on sensory diets for kids.

If you want to look into whether ambient lens therapy could work for him a behavioral optometrist can help you out. It doesn't matter if he is verbal during the testing or not. I have just put ds1 into yoked prisms and I think it is helping. But at 5.6 it is a bit of a battle atm convincing him to wear his glasses.

[sickofsocalledexperts]

We use a branch of ABA called Verbal Behaviour, I recommend that highly for both getting speech going and sorting out any behaviours that are getting in the way.

[hereidrawtheline]

catski - just wanted to say I feel for you. DS is 2.6 and DX ASD (HFA or AS) just recently so I know how it feels. We have been through a very hard time but I have found the other Mums here to be so helpful and kind. And it is so good to get it DX early because we can start sorting stuff out, reducing triggers for meltdowns etc and helping him develop before things get totally out of control. Keep posting. There is a book I have seen really highly recommended, I have bought it but it hasnt arrived yet, though I have read extracts. 10 Things Every Child With Autism Wishes You Knew (I think!) and another which is something like 1001 things to do to help your autistic child.

Sorry I cant link right now I am in a big rush and havent got lots of time to post but google them. I have high hopes. And best of luck.

[allthatglisters]

catski - it's good you have a diagnosis as it will make things a lot easier if people understand how he is. In the long term there is a lot of hope. My DS with dx of ASD/AS is now 12 and has come on incredibly - from a little boy who couldn't communicate, with screaming tantums, to a quite able if rather quirky young man. He eats a wide range of foods now and can cope with his phobias. He is thinking of eventually going to university. It turns out he's of above average intelligence - we couldn't tell before. We are beginning to see the person inside who was there all along. He will probably never exactly be the life and soul of the party but he will have friends, interests and a life. It's mainly been in the last couple of years with the onset of adolescence that he has improved funnily enough.

[catski]

Thank you so much for your help and wisdom. I am feeling so alone here, in a country where I don't know how to navigate the system (and am not fluent in the language).

I understand what you are saying amber32002 and think you have said some wise words. Part of the process I am going through at the moment is accepting that my son will never be 'normal' (whatever that is) no matter how hard I work.

My husband has organised another meeting with the lead psychiatrist next week so we can discuss my son's diagnosis in more detail and for him (apparently) for him to reassure me that waiting a month for our initial meeting with habilitering 'doesn't matter'. They just keep telling me to 'keep doing what I'm doing' - but they don't even know what I'm doing! (And the answer to that is, not a lot. We get up, go to a playgroup twice a week and for the rest of the time we are home pottering around or doing the supermarket shop).

I feel so upset. I am at home alone with this child who I feel has the opportunity to blossom if given the right help, but no one is telling me how to help him (other than you guys, for which I am so thankful). My husband goes to work everyday and to some extent has some distraction from it, but I'm at home, being the one responsible for our son day in day out and I'm frustrated that I don't know how to help him properly.

It feels as if there is so much I need to know and it is overwhelming. Is there a handy list of different therapies on the internet? I knew about ABA, floortime and the biomedical approach but I've never heard of vestibular or ambient lens therapy. I think part of my problem here is that I am going to have to find out what we need and who to ask for it.

[catski]

By the way - does anyone know if there is a quicker/cheaper way for me to get hold of the Hanen More Than Words DVD? 90 dollars (including shipping) and 4 to 8 weeks delivery. Checked on ebay but no luck...

[TotalChaos]

here's an NAS (british national autistic society) webpage with details of all sorts of interventions:-

www.autism.org.uk/nas/jsp/polopoly.jsp?d=297

Don't worry about wasting a month - you need that time to let the dx sink in, and to do some reading around the subject - and bear in mind how early you've realised there is a problem, he really is so young. And don't underestimate the value of pottering around - obviously I don't know what sort of intervention will suit your DS best - but some of the interventions such as Hanen for language are very much built around working language into normal daily activities - bath time/meal time and of course play time.

[TotalChaos]

winslow publications (based in england) are good - it probably won't be cheaper, but should be much quicker.

www.winslow-cat.com/cgi-bin/winslow.storefront