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Is there a support thread for those waiting to be diagnosed with Asd?

41 replies

MissMalteser · 15/04/2018 20:38

Hi everyone, I posted my thread in chat today about my worries re my 2 year old son who is currently awaiting a developmental assessment, was advised to check our this board and it seems there are a lot of us in the same rocky boat
I was wondering if we could start a general chat thread, somewhere to offload our worries with other parents going through the same?

OP posts:
MrsG31811 · 17/05/2018 13:29

And can I just say, that I take my hat off to all of you! No matter what anyone says you have a doubly tough job and are doing great! X

KitKat1985 · 21/05/2018 20:39

Hi all. I hope you don't mind if I join you all. Brief background (copied and pasted from another thread of mine to save my fingers!): DD1 is 3 years and 8 months. No formal diagnosis but lots of warning signs for autism (developmentally delayed in all areas, unable to independently speak sentences for example, but will 'parrot' lots of things she has head from us / TV; doesn't interact with other children, makes a 'humming' noise a lots, very distressed by changes to routine etc). She has the language skills of a 2 year old. We're awaiting a lot of appointments right now including SALT but there seem to be long waits for everything, and we have no formal support in place for her right now. Her nursery referred her to the Early Years intervention service (the local council education support service for pre-schoolers) and we had a letter through last week to say her referral had been accepted, and she would be assessed in a couple of weeks time (they are coming to see her at nursery and at home). Everything seems to take so long! I'm at the point where I think an autism diagnosis is inevitable from things nursery and other professionals have hinted at, but until we can get her a formal diagnosis it seems to be difficult to access support, and so I just want to get on with getting her formally assessed now really.

KitKat1985 · 21/05/2018 20:44

MrsG when is your appointment? It's nice (for want of a better word) to meet another parent of a girl awaiting an ASD assessment. I think having girls does make it harder as I'm told girls present slightly differently to boys, and because autism is rarer in girls I don't think it's often considered by professionals as readily as they do for boys.

LightTripper · 21/05/2018 23:32

Hi KitKat. I'm another Mum of a girl waiting for assessment (actually just had it, results Friday). DD is just 4 so similar age to your DD? Sounds like hopefully things will start to move for you soon!!

KitKat1985 · 22/05/2018 06:16

Hi LightTripper. Yes our DDs are similar ages, but I guess your DD must be starting school this year? How did the assessment go? I bet you are anxious for Friday to come around so you can get results. x

BlankTimes · 22/05/2018 10:40

even some of my own closest friends, just see her behaviours as naughty and bratty.. and often try to get involved on disciplining her and it's so hard
You're really going to have to get clued-up on how to explain that autistic children need different parenting. That your child is not being whatever they think, your child is actually overwhelmed by the situation she is in and is expressing her distress the only way she knows how.
They are perceiving her as a naughty NT child which is completely wrong. They are (guessing here) imposing sanctions, consequences that they would for their own NT children or loudly saying 'she needs' etc. which won't work for a child who has autism.
Some of those friends will understand, some won't. The same goes for relatives. Don't underestimate how hard this can be, you certainly will find out who your real friends are, who you can rely on for support and dump those who refuse to "believe"

because autism is rarer in girls
Current thinking is - it's not. it's just so badly under-diagnosed in girls, particularly the ones who can mask in school, don't display disruptive behaviour and are okay academically.

Many parents in the early years think the school know best and will help them get support etc. but schools, both state and private vary tremendously in their perception of SEN and their ability to provide the right interventions for each child's needs. Have a good read through this board and SN Chat to see what areas other parents find concerning and you'll see you're not alone Flowers

LightTripper · 22/05/2018 10:57

Yes! She's already at a private pre-school and we decided to keep her there (even though it only goes to 7, so lots of agonising over that decision... but we didn't get our top choice state school and the one we did get would have meant a schlepp and big class sizes, whereas the private is a 5 minute walk and lots of the kids she knows already, a building she knows already, etc.) So we're hoping that won't be too disruptive though it means we have a potentially very tricky change coming up at 7. At least by then we'll know what she finds hard and what she finds fun about school, which hopefully will help plan the next step.

We were supposed to get the results of ADOS last Thursday but it was cancelled last minute, so I seem to have got most of my anxiety out of the way then.... although I'm sure as Friday approaches I'll get nervous again. I have literally no idea what they will say. I have follow up questions for all options (high score, borderline autistic, borderline not autistic, and low score!) I'm guessing borderline autistic based on limited eye contact and slow response to name, even though she did most of the actual tasks quite well (I think!): but we'll see.

I agree with BlankTimes. What you see a lot from the threads here is the real tightrope. If you have a child who is quiet and causes no disruption people don't believe there is a problem and offer no support (even if the child could be getting so much more out of school and life with a bit of support). And if you have a child who is loud and disruptive then people believe the problem is your parenting as that places no responsibility on them to provide support or modify their teaching methods. So it's going to be time to grow a thick skin (which I do not have and am dreading).

Also on girls I suspect it is as common as in boys (why would it not be?) but expresses itself very differently. It may be that some girls with the same gene or whatever cope so well that they wouldn't be considered to be sufficiently "disabled" to merit a diagnosis. But others mask well and internalise their problems for a long time, until they hit teenage years and it all gets too complicated/too much and they break down. I'm really hoping that with this generation of girls getting diagnoses and therefore having parents and teachers understand them better we can avoid a lot of that, but it's really a "guinea pig" generation in lots of ways as these girls were simply never picked up before until much later in their lives. But I have to be hopeful that self-knowledge is a good thing, and will help them navigate the teenage years which, let's be honest, are a bit shit for lots of people (not just autistic people).

MrsG31811 · 22/05/2018 13:08

Hi all!
KitKat her appointment is 11th June..
I too had a lot of signs from around 2/3 with DD.. she was delayed with speech and other milestones, like walking and especially toilet training. That was a big one, and something that even after she mastered, she would often take a step backwards in this. She has never been a great sleeper. Even now, after 6 hours a day at school she is rarely asleep before 10.30... And not for lack of trying either! In fact the only time she does sleep well is when she's poorly bless her.. it's exhausting... And on top of the 6 hours at school we have 2 hours travel to and from a day.. we used to live 5 minutes from school, now its a daily struggle.. but I could not even consider a move for her at this stage (the school were only just starting the referral process).
BlankTimes, you are right. I DO need to get clued up!! It's so hard to know Where to begin with explanations... one of the hardest parts for me is the looks or comments (in other words, judgement) I get from passers by.. there are times with DD that I have to restrain her, in public, because she runs. And when she runs, she goes for it.. she is a strong girl, and is nearly 7.. I myself and not even 5 foot but also have a 2 year old in a buggy that I have to give my attention to. So when I'm stopped at the side of the road and I'm holding her, sometimes I'm sitting on a wall with my legs wrapped around her as well, And people walk past with a look or a comment. It makes me feel really shit, like I'm failing, and that people think I'm hurting her.. which is usually the other way round to be honest. It hurts to feel like that. And I know I shouldn't, because some people don't get it, and they don't know what's going on, or why I am holding her while she screams. And that actually when she's like that, the quickest and safest way to calm her down when she's locked into a meltdown is to hold onto her right... but it does make me feel like I'm being judged and that sucks.
Does anyone else have to deal with meltdowns this bad when out and about?
Sorry!! I feel like I've done nothing but rant and moan.. I just don't actually know anyone personally that is going through this so I don't really have anyone who can tell me that it's gonna get better, or they know what I'm going through on a day to day basis.. I suppose I also feel a lot of pressure being a younger mum?
I have forgotten the point of this post? To be continued, once I get my brain working again!! X

MissMalteser · 01/06/2018 15:43

Well how is everyone going? We are our developmental assessment this Tuesday and I am pretty nervous about it, the letter said it should be around 1.5 hours, does anyone know what to expect? I’m having trouble imagining keep ds in a room for that amount of time Confused
I have also noticed recently that ds seems to be becoming more clumsy, and when he runs he seems to run to the side? He has very little fine motor control as well, is this stuff that will be looked at also or should I make a doctors app? Ahhh so many things to worry about l!

OP posts:
SpringerLink · 04/06/2018 11:14

So... after many bungling errors I finally have a date for my DS’ ADOS and ADI appointment. On 19th July!! We were told on 12th April that it would be 6-8 weeks wait for the appointment.

In all, it’s taken a whole school year from referral to getting an assessment date. And I’m total 3 school years from first major concerns being raised, and 4 school years from the first time a teacher mentioned the possibility of SEN.

I am so exhausted by the effort of getting this far.

LightTripper · 04/06/2018 12:47

I really hope things improve for you once you have the assessment Springer - sounds exhausting.

DD got her Dx the week before last, and within 24 hours we also got offered a place at our first choice state school... so now agonising about whether to switch back to State (we loved that school, but when we didn't get it persuaded ourselves that sticking with private was better with the smaller class sizes etc.)

I know it's good to have choices but also I hate making them!

LauderSyme · 04/06/2018 23:59

Hello everyone, thanks so much for starting this thread Malteser Smile
I'm afraid I have only skimmed today as I really ought to be asleep right now, but I look forward to reading more in depth another day.
This is very topical for my ds and I right now; he is 8 and his initial assessment is in 2 weeks time. Getting to this point has taken us a time frame pretty much identical to Springer's and ds's social and communication skills are going backwards. His school is brilliant though, and has been providing lots of supportive strategies for several years.
I will be back soon. Hang in there, everyone Cake Wink

SpringerLink · 05/06/2018 09:25

@laudersyme - same here. School have been really good since making the referral. Up to that point it was very much a focus on my parenting, and although that was useful to an extent, it’s been much better since we’ve started to have strategies at school too.

Currently reminding myself that I just need to get a diagnosis before secondary school, and that’s still 2 years away. DS is about to finish year 4.

I’m feeling a bit more chilled today, but need to focus on getting DS to sleep in his own bed now. He really disrupts my zzzzzz...

MissMalteser · 05/06/2018 20:54

Welcome Lauder :)
I think we have been very lucky with the paediatrician we had today, she was able to explain so many things to us which made sense.
I’m still getting up on the language but from what I understood her report comprises of one third of the 3 professional opinions needed to make the diagnosis formal, and she will be ‘fast tracking’ to the other 2 (an at home visit and a salt visit?) so we could get access to the support required asap, I’m so glad about this but because she said ds is so young to be exhibiting soo many autistic traits and because he is completely non verbal that the level he’s functioning at is quite low so I’m interpreting this to be the reason why it’s being pushed ahead faster.

So good news he’ll be able to access help faster but it really hit home today that this is real, my beautiful baby boys life is going to be so much harder than everyone else’s :(

She also took blood to test his blood/thyroid levels and for any genetic abnormalities although I’ll be honest I was so shell shocked I didn’t really take this in so I’m not sure exactly what it’s for! Anyone else heard of this?

OP posts:
LightTripper · 05/06/2018 23:15

We were asked if we wanted genetic testing for DD but we're told there usually aren't any markers, so I'm not sure what it would tell us really. I haven't heard of the thyroid thing though?

I know what you mean about Dx being good but also really bringing it home to you Malteser. At the same time I try to remember that lots of NT people have a miserable time. Neurology is no guarantee of happiness. Probably trite but I think it's true. And happiness is what matters in the end.

Welcome Lauder!

LauderSyme · 06/06/2018 23:36

MissMalteser I've been able to read properly today and your posts have brought a lump to my throat. (Not just yours actually!)
I'm so sorry you've been feeling dispirited and isolated. Today's news is good though re your appointment: the sooner both you and ds get the right help, the better.
I have just started to access support and have found that there are professionals and parents/carers out there with strategies, knowledge and much wise advice to share.
Their tips and understanding ears have really helped me feel less alone and lost, and hopefully this is the start of you getting that too.

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