Starting on the road to ASD / AS diagnosis

[nenevomito]

My 4yo DS has been referred to the Ed Psych in school and also for clinical assessment by the GP for possible ASD / Aspergers. I say possible as we're just at the start and nowhere near a dx yet, but that is what the GP is looking for.

When he was at Nursery, they would report him getting frustrated and angry and that they thought it would do better in school where it was more structured. He started school in Sept and by the end of the first term, they wanted to talk to us, not because he was being naughty or unpleasant, but they were worried about what would happen when he moved into Y1 where things were more structured as he was lovely, but struggled in the classroom environment.

They also explained that he was struggling socially - in that he was happy for other children to go and play next to him, but didn't seek out friendships and was alone. He has some imaginary school friends that he plays with and tells us about. School have said since that he plays with another boy, but if I ask DS if he has played with X he just looks blank and doesn't respond.

The school have been brilliant. First off for picking something up early and doing something about it, but also because while they have not mentioned ASD / AS themselves, they have alerted us to a lot of things that DS does that we are used to, so don't notice any more, but are not within "normal" ranges of behaviour for school. They are working with the EdPsych to sort out how to help him out best in school and gave us enough information to go to the GP. It's not all ASD assessments though, as school are also saying that in some areas DS is "intellectual" and they believe he is G&T in terms of language and creativity, so on top of having to suddenly learn about ASD, I'm having to learn about what the G&T support entails as well.

The GP was very to the point and said he thought it was more about where he was on the spectrum rather than whether he was on the spectrum or not and has been supportive, but the process for assessment as I am finding out, it going to be a long one.

This is turning into a long one - stay with me if you can!

The problem I have now is support for me. I tried talking to one friend and her response when I was trying to tell her about it was "oh well all children do that, its nothing". I couldn't get through that if I have 3 teachers, a SENCO an EdPsych and my GP saying that it is something, that I have to take notice. Also she said "well my DS does that, and he's OK" as if she wanted to reassure herself.

My other friend was very much saying "well you don't want him to have a label" and "aren't you worried about labelling him so young" and "it all sounds like an overreaction to me." When I tried to explain that I just wanted to make sure that if he does have aspergers or ASD he gets all of the support he needs she said "well I wouldn't want my child to be labelled like that". At that point I wanted to hit her and say "Oh and you think I do?" Of course I would rather we weren't going down this route, but what am I meant to do? Say, thank you school and GP, but I am going to ignore your advice as I don't want my child to be labelled. Surely getting him the right support is more important?

My parents know, but Mum thinks that its poor teaching?!? at the school and Dad thinks that its just because he's young. Both think I am doing the wrong thing having him assessed because (and get this) "It will be on his record forever". What is that meant to mean.

Where this leaves me is with all of the worries and upset and concern that any parent has when they are told there is a problem with their child, but friends and family that I have just given up even trying to talk to. So I am here. On the internet. Telling Strangers, who if they have got to the end of this post deserve a medal.

Thanks for reading.

If the school are wanting to start the process of having him assessed then it would probably be worth going with it and seeing what happens.

Your Ds will not progress through the assessments if he doesn't have any issues, he will just be discharged. But if you refuse help for him and then realise you need help in the future you will have wasted precious intervention time.

As for your family, it is really common to hear people on here saying that their parents or inlaws don't think there is a problem.

Don't forget not that long ago people with quirks or learning difficulties were put in institutions or hidden away.

You have to do the best for your son and grow a thick skin to unhelpful comments from others [easier said than done I know].

When my Dd3 started on the assessment process lots of members of my family didn't believe that there were any issues, I have been drip feeding information to them and gradually they have realised that she does have some issues.

Good luck with everything and come here if you need support there are always people arround who know how you feel.

And we are not strangers anyway we are all working towards the same thing on here, the best future for our kids.

.

Hello babyheave

You are at the beginning of a long and often difficult road, but there's loads of support and information here on MN SN board and there will always be someone around to offer you advice, support, a shoulder, or even just some lighthearted relief. We have a Friday night "too tired for .. ." thread every week where we all share our stresses and/or successes from the week, pass around the virutal wine and chocolate and hopefully manage a bit of light relief, everyone is welcome.

Its great that your ds's school is being so proactive and you are absolutely doing the right thing by having him assessed, so put any worries about that out of your mind. A lot of us can only dream of our ds's being at a school like that - if the school is supportive and proactive, that's half the battle really.

It is a big, scary thing to go through and people who have no experience of it very often just don't get it. If I had a pound for every time someone had said 'oh all boys do that' or 'my ds does that too' and talked about labelling of children etc, I'd be very rich. They still do it now he has a diagnosis, it does grate, but I'm getting better at letting it slide off me these days.

I'm sorry to say, many of us have ended up distancing ourselves from so-called friends and relatives that regularly spout that kind of stuff. You will probably come to your own decision eventually that, anyone who is not prepared to understand and support you through the process is not a good person to have in your life at this point. I tend not to raise the subject with people unless I am already pretty sure of their 'leanings' iyswim. We have been unable to tell any of dh's family, as there 's absolutely no way they would understand, let alone support us or ds.

If it helps, try to think about a possible diagnosis, not as a label, but as a signpost for pointing both yourself and any professionals who are involved in the right direction for giving your ds the support he needs to become the best that he can be. A diagnosis (often referred to as dx on here by the way) won't change anything, he'll still be your little boy just the same, but it does mean he will have access to all the support and resources he needs to help him with any difficulties he might encounter.

So, do I get my medal now?

So sorry, babyheave, that your friends and family aren't being more supportive. I expect your parents are just going through the denial stage, that you seem to have managed to get through. You sound like you are doing all the right things for your DS. It's all a bit overwhelming and upsetting but unfortunately necessary. If your DS is on the spectrum, it's not the end of the world. He's still your lovely child and hasn't changed. If he's G & T as well, that will hopefully mean that he will be able to learn all the social skills etc that come naturally to NT children. He will just require more time and support.

You'll probably have to become a PITA mother and keep fighting his cause. It sounds like your school are fairly proactive, but it's worthwhile getting up to speed on the SEN education system yourself. SEN sounds so serious, especially if he's bright, but problems with communication and interaction also need to be supported.

Good luck with all the assessments. Find out if you think he'll need 1 to 1 support at school and what the school think. It maybe that you and the school are in accord on how to progress, but if you disagree, there's no harm in being forceful and going through the Statementing process by your own instigation.

I lost track of all the friends who said, "But my DS does that." Yes, but not that, and that, and that, and every day! They came around eventually. They are just trying to comfort you and tell you it will all go away, but unfortunately, they are naive.

Keep asking for advice. Lots of good experience on here!

Cross posted with moosemama, again! She's said it all so much better!

Yes, thank you. .

Thanks for both replying so quickly. I know I am doing the right thing by going along with all of the assessments. Of course I am hoping that they say "well babyheave, your son is just bright so no need to worry!" but I know deep down that they are probably right. To be honest, since this call came up, things just kind of fit together in a lightbulb moment of "well, that explains a lot doesn't it".

I am very grateful to the school as I've been reading through threads on here getting up the nerve to post and know that not everyone has the same experience. We made the decision not to send him to our local school with a 60 intake for YR and send him to a village school 30 mins drive away, but a class of 23. I visited both schools and the vibe in the one where he goes to was so lovely. I thank my lucky stars we made that decision as I just don't know what our experience would have been elsewhere.

The brilliant thing is that in all of our discussions with them they have focussed on what they can do to support him, rather than about how difficult his behaviour is. All I want is the best for him and strangely I'm not so bothered about a label if it comes with the help he needs, even if I'd rather not be going through it at all.

I'm waffling again. I will make myself a badge that says "don't try to tell me that there isn't a problem unless you're a professional and then I'll listen". Although I probably need something shorter and snappier!

dh & I have atypical asd suspicions for my ds and my sis keeps saying, 'you're over-reacting, you don't want him labelled at this stage, he is young, he is just a boy... etc etc' so I know what you mean. We haven't even mentioned it to m-in-law as she will say it's all a load of rubbish.

Well, if it is an over-reaction- what is the worse that can happen?- the professionals will tell you there is nothing to worry about and you can all forget about it. However, if you ignore it and it turns out there is a problem, you will have missed the opportunity to help him when he needed it. Go with the professionals- they are qualified for a reason.

I do think some people will think that they are being reassuring by saying that 'my ds does that too' etc. Perhaps politeness demands that they say something along those lines. Maybe they think you'd be totally offended if they said 'yeah, there's definitely something wrong there'. Obviously, it's completely misguided but perhaps not their intention to offend.

The people who will understand the best are others with similar experiences so maybe you could look into asd groups locally.

Thanks too EllenJane. I've been reading a heck of a lot recently. At first it was to disprove the theory, but that didn't work very well. Now I am just trying to learn as much as possible.

The GP was realistic about how long it was going to take, but I have to admit some impatience (just assess him already!). Out of interest - to anyone who has been through the process am I looking at it taking weeks, months or years???

Just off to school pick up, but my DS took 6 months for DX. You can get school assessments rolling in parallel though, as they should be based on need, not DX!

Bye or I'll be late!

Hi Babyheave,

I claim my medal as well!

In all seriousness though I would have to give a gold star to the school for actually picking up on your son's social/communication difficulties at this still quite early stage in his education. Not many schools would have done that and just let it go. I am totally glad they have done this now.

If they can get an EP into seeing your son (their visits are as rare as hen's teeth) this would also be helpful to with regards to addressing his additional support needs at school.

GP however cannot officially diagnose as I am sure you realise; the GP needs to refer you onto a developmental paediatrician for this and the whole assessment process is a long and drawn out one.

As you have also realised and early too, any additional support if needed and given early will only be of benefit to your son as he progresses through his school career.

No-one has probably mentioned it to you yet (and if you were someone would probably pipe up that a statement is not needed here) but you may want to start reading about the Statementing process via websites like IPSEA's www,ipsea.org.uk. I realise they are mentioning G & T here to you but if he needs additional support within school long term this is something I would seriously consider you look at now rather than say when he arrives at Junior school and it all falls apart there. Statements are not just for academic needs, they are also there to cover social and communication difficulties as well. A statement if in place would have his needs properly documented on record as well as it being a legally binding document.

Your friends seem to be in denial; you really don;t need so called friends like that clouding your own judgment. Quietly ditch them over time!. You will make some good friends who will truly accept you and your son for the good people they both are. After all we are all different and we act as we are made.

Oy BH's mum - this is NOTHING to do with poor teaching, sigh and as for you BH's Dad well what are you on about?!, It won;'t be on his bloody record forever!!. My son has a Statement of Educational Needs; no employer will be interested in learning of that particular detail when he comes to get a job. This denial again is commonly seen in families where they want to believe that there is nothing amiss. It does them no favours in the long run. Please do not take it either to heart or personally hard though that is to do; it says a lot more about them than anything else.

As Moosemama (hello!) rightly states it is the beginning of a long and difficult road and you will in time develop a thick skin and ignore the naysayers.

You are his best - and only - advocate. Never forget that!!!.

Will be glad to support as and when needed. I only wish I had MN when my DS started in nursery (he's now at secondary school!).

they're all really common reactions, unfortunately

a label will never cause a child problems, if he gets a diagnosis of ASD it's because he has an ASD and it's the ASD that will cause difficulties for him, not what you call it or don't call it - it's much better to have a child with a label that they might not need to use in later life than it is to have an undiagnosed, unsupported older child who's having massive issues but doesn't know why. You absolutely will not get a diagnosis if he doesn't have an ASD, they're really thorough.

It is sometimes hard to convince people that ASD traits aren't just what every other child does, that's because they are things that other children do - it's the extent that they do them to or the age that they're doing them at that makes it unusual

if they were things that no-one else did it would be a blooming doddle to get diagnosed, lol

how long it takes to get a diagnosis depends a lot on where you are, some places are more reluctant to diagnose than others and how typical he is for an ASD (how well he ticks the boxes on a form) if he behaves pretty much textbook for a child with an ASD it's usually between 6 months to a year from the first assessment (they like to do more than one just to be on the safe side in case they suddenly change, lol, but especially as he is quite young), if they don't think anything at all's wrong with him, they'll tell you so straight away

if they think he might have an ASD, but he's not exactly ticking off their boxes bang on - that's where it might take a bit longer and will involve going back for assessments every six months or so for a few years

how long till the first assessment just depends on how busy the place you've been referred to is, it could be a couple of weeks it could be a few months

I went to a local autistic trust talk last night and the lady speaking I think nailed the thing about family and friends and their responses. It is human nature to try and be kind to your friends and whilst you have had time to get used to his ways and issues, and so have school, they (your friend/family) often haven't. Friends are then often defensive on your behalf in a subconscious effort to reassure you, because after all no-one wants a problem so they deny it is there. Sadly all they do is either make you feel cross they are not listening or worse make you question yourself too. It is probably a point we all cross ourselves, some faster than others where you are in denial there are issues and then the reality sets in and you move onto thinking about diagnosis and help from there.

You do need support so keep talking to these people. I would see if you can get some information sheets for your parents to inform them more about what autism/aspergers means and the fact it is not down to bad parenting, bad teaching or not enough or too much of anything! I didn't know much about our local autistic trust until last night and I don't honestly know if they are in every area, but there is a national autistic society who I am sure can help you with some of this sort of stuff. Give your parents and friends a bit of time to start to think about what has been said and help them to become better informed. Remember they have only thought at the time they were being helpful, even if in reality they were not.

I think grandparents often worry that kids with asd/ADHD/as etc can't and won't be able to do 'normal' jobs she they are older. It helped my parents immensely when I reassured them that actually yes people with AS and ADHD can and do join the armed forces/police etc etc don't think I've eve had to tick a box on application form saying whether or not I have ADHD! I recently looked into all this for my dd btw . I think grandparents mean well but thei emotions get in way, and friends that don't understand and aren't supportive aren't worth it x

Depends if people see autism as a problem or not. I'm on the autism spectrum and a regular on here. I'm not in the 'mild' bit either, but through sheer bloomin' persistence I've got my own company, a lovely dh, a lovely ds (now 18) and more friends than I could shake a stick at (not quite sure why people would want to shake sticks at friends, but the world is full of strange expressions!)..

As a young child and indeed right the way through to my early 20s I struggled socially and through sensory issues before I could start to really make sense of things, but those were in the bad old days when no-one realised what autism was and wasn't. And there was zero diagnosis or help for people like me.

Do I regret the label? Not even slightly.

Things that are positive about those on the spectrum? Generalising throughout, we're loyal, honest, persistent, can hear see and sense three times more detail than others can, are fantastic at spotting things that need correcting...those are skills that mean we can apply ourselves to all sorts of useful things in life - if we're given the chance and the learning time.
Our IQ is irrelevant though - what makes a difference is our social skills, so if you get a diagnosis, push for all you're worth for social skills training - through the local autism charities, through specialised groups, etc.

Always here to help in whatever way I can...(er most of the time anyway)
Amber

Hi all and thanks for all of your replies. Deep down I know you are right tabulahrasa and they my friends were just trying to say the right thing and I suppose they are only saying what I said myself at the beginning. "He's just bright, he's young, other children do what he does" and all of those are right, its just that what he is doing things to an extend that the other children don't.
I have had to accept that if he was just doing what other kids do, school and the GP wouldn't be referring him for assessment. I guess I just want people to realise the same thing.

Where we are up to at the moment is that next week DH and I are meeting with the EdPsych at school to talk about DS. We've not seen her report on him yet. On the other side, we're waiting for the arrival of an appointment from the assessment clinic. The GP said it would include quite a long questionnaire - does anyone know what this is or what it is like?

I think at the moment I have my practical "doing things" head on. I may sound calm and very rational about it all, but there is a big chunk of me at the moment who's very unhappy about the whole situation and feels like kicking someone.

It'll be a history of your concerns and developmental milestones. Take your child health record and any info you might have of baby firsts, first steps, words, pointing etc. They may ask if you have any eccentric or DXed family members. Most of it will be in your head, so don't worry.

Probably best if you don't kick the paed!

Probably best if you don't kick the paed!

Why? is that considered bad form .

I don't have any dx'd family, although there are a couple who I wonder about. DH doesn't know his Dad or that side of his family so there is a bit of a blank there. I guess I'll just have to wait and see.

Others are right in what they say about friends and family trying to help and meaning well.

I should apologise, that part of my post was coloured by my own experience, where in our case dh's family refuse to even acknowledge autism exists, despite their own son and one of their other grandson's both having AS. His father actually physically ejected the Ed Psych from their house for even suggesting it - that was 35 years ago and let's just say, they've not moved on! We can't even raise the subject with them.

In our area you are referred to a paediatrician, who you usually see within 6 weeks. If he feels full assessment is appropriate he refers you to the dedicated ASD assessment unit, for which there is an 18 month waiting list. In our case, ds got seen sooner because they already had reports from the Ed Psych and ASD Inclusion Team. We also did all the questionnaires with the Ed Psych, so that saved some time. Ds had his assessment and diagnosis twelve months, almost to the day from when he first saw the Paed. It sounds like you might be bypassing the paediatrician's appointment though, so its probably different in your area.

The questionnaire is likely to be the one that they use to gather a complete history of your ds, from antenatal right through to the present day including health and behaviour stuff, as well as a family history.

Do, allow yourself some time to process what's happening. I totally understand the whole needing to keep doing and stay practical thing, but you still need to allow yourself to be sad/angry/worried.

Babyheave

You're not waffling at all - you're unloading and processing which is a good thing and it's what we are here for.

An awful lot of children with high functioning ASD or Aspergers don't get picked up on until they are a lot older. Particularly if they are first or only children. To us, our dcs are just our dcs, we accept them wholly quirks and all and if we often have no frame of reference.

We didn't realise there was a problem with ds1 until he started Reception year. We knew he was very bright and a bit quirky, but it never entered our heads that there might be a real problem.

When we did realise there was something wrong we couldn't get the school to listen or recognise it. I only got someone to take me seriously when he went into freefall on starting Junior school when he was seven and a half. Even then I didn't realise how many of the things he did/does could be attributed to the ASD. I hadn't even realised the noises and facial tics he had were tics. His assessment was a real eye-opener, as even though we'd accepted a dx was probable, we hadn't really understood the full extent of his difficulties. Its a credit to him that he managed to develop and employ enough coping strategies to get him through infant school as well as he did.

When he is at home with us, he is just ds, we are so used to living with and around him that we don't spend our whole lives actively thinking about his AS anymore. Its only really when we are somewhere where there are a lot of other children that we realise how different he is and even then he gets on ok for the most part, its only the occasional thing that marks him out as different. Other children are usually oblivious to his quirks, they do get a bit bored of him talking 'at' them about his favourite topics, but children being children they either tell him to shut up or go off and do something else.

Have you read Tony Attwood's book [http://www.amazon.co.uk/Complete-Guide-Aspergers-Syndrome/dp/1843106698/ref=ntt_at_ep_dpt_1 Compete Guide to Aspergers Syndrome]]? Also, I found Brenda Boyd's books reassuring when we were first starting down the dx route with ds. Particularly the one on appreciating Aspergers syndrome.

You're son sounds lovely, he has such a lot to offer this world and will find his own path and the fact that this has been picked up so early gives him an even greater chance of learning to overcomeor mitigate many of the problems relating to AS. I know its a cliche, but a lot of the greatest people in history are now believed to have had ASD and there's far more acceptance and understanding around now than there has ever been historically. Another good thing about getting a dx is that with understanding and acceptance, comes strategies for handling and helping our children, which in turn makes both our and their lives easier.

Sorry babyheave. My DS2 has ASD DX and some of your examples sound very familiar.

My DS is now 11 and he has always run up and down through the house to burn off a bit of energy. He also jumps up and down whilst flapping his arms when he is excited. I still think it looks cute, but maybe not when he's 15?

Eye contact is another box ticked. I used to turn his face to get him to look at me, but he hated it so I stopped. He won't answer even a direct question, often, without a lot of persistence.

Obsessions, oh yes! But they used to confuse me because he has rolling obsessions. An obsession might only last for a couple of weeks or a couple of months, or a couple of years shudder then on to another. Sometimes 2 or 3 at once.

Tantrums don't last for as long anymore, and he can change from hugely upset to quite happy in seconds.

He doesn't make many noises, apart from an occassional, rapid duh, duh, duh, duh, duh. Which I hate hate hate. It's true, the noises are almost the worst thing, because they fit right in to that stereotype 'mad' person. Shouldn't say it, probably, but they make me cringe.

I can't DX him, of course. But I think you have enough concerns to know that there may be something up.

I was in denial for about a year and I have a DS1! Really don't beat yourself up about it. (And your parents are probably feeling shit, defensive and guilty. They'll come around, they sound like they've been helping you out practically, just tell them you need a bit of emotional support.)

He's still your lovely boy, as cute as ever, and he'll now always be extra special. You'll become a PITA mum and you'll fight all his battles for him and with him. (((hugs)))

Have I cross posted with moosemama again? She's stalking me, I swear. (Or am I stalking her?)

Forgot to say that I love my DS2 very much and although I'd never admit it in RL

Ellen, - you're stalking me!

My ds has rolling obssessions as well and also tends to have two or three at a time. That caught me out in the beginning, as I though he would have to be obsessed with one thing forever for it to be AS.

I think I actually convinced myself that he couldn't have AS because he wasn't ever interested in Thomas the Tank Engine as well at one point. Mind you ds2 is nt and he was obsessed with Thomas - he has also now passed this onto his little sister, who is currently sitting in the middle of the living room floor surrounded by about fifty trains, three different tracks and wide selection of Thomas story books. [sigh]

We didn't realise there was a problem with ds1 until he started Reception year. We knew he was very bright and a bit quirky, but it never entered our heads that there might be a real problem.

I could use this exact description for my DS too. It sounds like I have been really fortunate with the school picking it up in the first term and putting everything into action.

Are noises common then? The facial tics thing has made me think as well as he does this thing where he stares and twists his head.

DS is still DS I know. I still love him to bits and in some ways its good to know why he's not really made any friends and why he struggles in swimming class (and why we got asked not to take him back to gym class as he had a melt down when he couldn't do something they asked him to do).

At the moment though, its pretty much on my mind all the time and I don't even have a dx yet. I still swing a bit between "there's nothing wrong and they won't find anything when they assess him" feelings and the "They are right" feelings. I'm even worrying that if they find nothing wrong its all just down to my bad parenting. I'm just so desperate to make sure I do the right thing by him. Its a very confusing time all around.

My DS2 never liked Thomas the Tank Engine, either. And every professional seemed to ask me about it. Another thing that helped my denial phase go on too long. I think it's the similar but slightly different thing they love so much. With Thomas it's similar trains in different colours and numbers. My DS got obsessed with Dr Who cards and Top Trumps. Similar but slightly different...