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DS2 being assessed for autism but im starting to have doubts

(24 Posts)
HeisenbergSaysHello Wed 29-Jul-15 11:47:38

Ever since DS was little i have sensed there was something not right. I was brushed off by the health visitor when i first raised my concerns.

At his 2 year check i had a new health visitor and again raised my concerns. This one took me seriously. Came to my house and observed him and went through some sort of development questionnaire. She came back a few weeks later with a speech therapist to again observe him and do some activities. They never told me their thoughts other than he was learning language in an atypical way and that he was a bit of a puzzle. We where put on a waiting list to see a paediatrician. We got to see him within 2 months.

Only when we saw him did he mention autism. Nobody had until that point although that is what i was thinking. He asked questions and stuff and done a report (as did the speech therapist)

He put on the report "he does have a number of very possibly significant autistic features" and is referring him for a full assessment.

So now, at the age of 3 and a half we are waiting to see a child psychologist and an early years specialist.

But, whilst waiting im now starting to have doubts. I wonder if im wasting peoples time. His behaviour has got slightly better, and he looks me in the eyes. He isn't hitting himself and head butting anymore. He isn't throwing as many tantrums.

I'm wondering if ive got it wrong? Is it normal to have doubts? He still isn't communicating, only repeating whatever i have said to him. But that's all, and still has absolutely no sense of danger.

I'm worried that 1) ive wasted a lot of peoples time and 2) if he doesn't have autism after all then why cant he communicate? Why is he so behind compared to others his age?

Sorry, not even sure if this thread makes sense. Its like, now somebody has finally listened to me im worried ive got it wrong

waitingforgodot Wed 29-Jul-15 11:53:26

It's normal to have doubts. No one can really answer this apart from the diagnostic team. It's worth pursuing in case he is diagnosed so that you can access the relevant services for him.

waitingforgodot Wed 29-Jul-15 11:57:48

Please don't worry about wasting anyone's time. The professionals are there to assess children. Some will get diagnosed and some won't

HeisenbergSaysHello Wed 29-Jul-15 12:04:33

I guess I'm just tying to process it in my own mind. Sometimes i watch him and think "he's fine" other times i think "no, there is definitely something there"

Like I'm looking for signs. It would be better if they just hurried up the whole process instead of having to wait for a diagnosis. Its like being left in suspense and you start to doubt your own instinct.

DixieNormas Wed 29-Jul-15 12:08:47

If they didn't have concerns they wouldn't have referred you so don't worry about wasting peoples time.

Its common to have doubts, ds4 is 2.6 and has just been diagnosed with autism.

Ds4 no longer headbuts and hits himself, makes really good eye contact and has never had lots of tantrums. He is still none verbal though.

ReallyTired Wed 29-Jul-15 16:22:35

You have not wasted anyone's time. My son was assessed for autism at a similar age and was found to have glue ear instead. If a child has an assessment for autism and is found to have a different problem then surely that is a positive outcome. If your child does have autism then early diagnosis means that help will be given early.

"Like I'm looking for signs. It would be better if they just hurried up the whole process instead of having to wait for a diagnosis. Its like being left in suspense and you start to doubt your own instinct."

A careful diagnosis takes months. I really feel for you, but its better to have no diagnosis than the wrong diagnosis.

DustAnybody Wed 29-Jul-15 20:24:07

Just wanted to let you know I am in the exact same boat. I am glad I read this post. DD1 has given me (and other family members and nursery workers) cause for concern so I have actively pursued an assessment. We are still waiting to hear whether the paediatrician thinks its worthwhile. At times she can seem odd and quirky and different to others her age and I think high functioning or aspergers (I have read its difficult to diagnose in girls as they hide difficulties better). But then at other times I think she is fine, and her quirks are just who she is. It would be interesting to know if your DS is diagnosed or not.
But you're not alone. This must be a familiar concern. Good luck.

mineofuselessinformation Wed 29-Jul-15 20:35:46

OP, I understand your angst.
Fwiw, my oldest dc was diagnosed with ADHD quite late on. (My now xh was very resistant to getting any kind of help - it took five years before I had the courage to insist, but that's a whole other story...)
It's very helpful to have any form of answer, as you know it's the disorder and not the child, IYSWIM. It's also the tool to accessing help and understanding.
Go for it. If you're told your child does not have autism, you've laid fears to rest, not wasted people's time.
By the way, eldest dc is doing very well and is a joy. smile

dietcokeandwine Wed 29-Jul-15 21:45:24

Go ahead with the assessment, OP. You are not wasting anyone's time. Even if some of the behaviours are no longer an issue (the head butting etc) there is still enough there, judging from your post, to warrant further investigation. The professionals will either DX or they won't, and whether it's one or the other no one will accuse you of wasting anyone's time.

My eldest DS has Aspergers and ADHD inattentive. Fwiw his eye contact has always been good and he's never really had any significant behaviour issues. He's still most definitely on the spectrum though.

HeisenbergSaysHello Wed 29-Jul-15 22:59:18

Thanks all. I attended a play session today set up by some health professionals for children with Autism. It was a chance to chat to other parents and people involved, some kids had a diagnosis some where being assessed.

Our speech therapist introduced me to another speech therapist but one who specialises in autism. So she came over for a chat and observed DS2, she noted that there is a lot of echolalia and that although there was other children playing in the same area and helping him build a tower he never once acknowledged the other children.

I also spoke to a lady with a son the same age who has a diagnosis and he came over and was staring into my eyes and told me he loved me! smile i was quite taken aback by that as i didn't expect it, perhaps proving that my knowledge about autism is very slim.

She's setting up a communication workshop and has invited us to it.

Its strange because when i first arrived i was quite upset by the whole thing, i just wanted to grab DS and leave, i felt like i shouldn't be there. Also that was probably my first experience of meeting other children on the spectrum and speaking to other parents.

I think its just all new to me and i sort of want to wrap DS in cotton wool and say he's fine, but that wouldn't be helpful to him, he needs the support.

My now xh was very resistant to getting any kind of help - it took five years before I had the courage to insist, but that's a whole other story

My sons dad has been in denial for a long time. Since he was little ive said there was something not right, but hr insisted that he was fine and "he's only little, give him a chance" i actually made him sit and watch an episode of Born Naughty and see how one of the children on there was sooo similar to our DS and got a diagnosis, now he's the one that's certain of it and im going into denial!

Thank you for all your kind words btw, i hope all your children are doing well flowers

rhetorician Wed 29-Jul-15 23:24:16

another one in the same boat - DD is 6.5 and we have had ongoing concerns with her (boundaries, meltdowns, poor peer interaction amongst other things); Ed psych definitely noticed her very poor attention and anxiety and GP thinks she's on the spectrum. But a lot of the time she is fine and manages well. We have initial assessment on Friday to see if she needs to be fully assessed (not in UK, no resources, crappy system). The point is that as their parents you know them really well, but you also love them, so you want the best for them - and sometimes that feels like diagnosis and intervention, and sometimes that feels like them being themselves, even if they aren't mainstream, if that makes sense

Peppasmate Wed 29-Jul-15 23:31:58

Both my ds are diagnosed with ASD & ADHD.

My son's are 7 & 10. They both are in special schools, though no speech delay & high functioning.

Autism is my passion & my life revolves around it. I have an indepth & comprehensive knowledge of ASD.

Yet I doubted with both boys if they would be diagnosed with ASD. I've rarely met a parent who didn't have doubts.

Best of luck op

Peppasmate Wed 29-Jul-15 23:33:42

Sorry op just to add, your not wasting anyone's time. The lack of communication needs addressing...

HeisenbergSaysHello Wed 29-Jul-15 23:44:33

I'm glad to hear its normal to have doubts. For so long his behaviour was so bad, i just wanted somebody to come along and tell me "if you do this, that and the other he will behave better" instead they have come along and said "we think he has autism" which translates in my head as "he's going to need a lot of help and his behaviour may never get better" (i know it will, but i cant see that far into the future just yet)

I just don't want him to struggle in school and in life sad

DixieNormas Thu 30-Jul-15 00:31:05

My dp was the same, ive known for a very very long time thst ds has autism but it wasnt until he had time off at christmas that he realised.

Ds is doing really well, hes at the more severe end of the spectrum (at least for now) but he learns new things all the time, he is like a totally different child to 6 months ago.

NessaWH123 Thu 30-Jul-15 16:56:59

Can I ask what symptoms suggest a child has ADHD or autism at aged 2 years as I am concerned my little boy is having difficulties ? Also can I ask really tired about glue ear as my son has that in both ears. How did they think autism when it was glue ear? Thanks

DixieNormas Thu 30-Jul-15 17:11:44

We checked hearing first as glue ear can affect speech as obviously if its really bad they cant hear you, I guess it could affect none verbal communication as well in really young children.

All children with autism present differently, with us it was no none verbal communication, so no pointing, bringing things to show us, no waving etc he also had speech regression, so he spoke a few words but lost them at about 14 months.

He didn't really play and when he did it was repetitive, so rolling cars along the windowsil so he could watch the wheels go round, repetitive play with those bead things you get on a board.

Lots of repetitive sounds, growling and stiffening, spinning, hand flapping, odd hand movements and looking at you out the corner of his eye. There were all sorts of things

portermum Thu 30-Jul-15 20:33:42

Hi OP, I am yet another mum in a similar position to you. My DS1 is heading towards 5 and has just been referred for an ASD assessment. In many ways he seems a normal, bright, happy boy but there are just a few things that make you wonder. The paediatrician says he presents a mixed picture but thinks there's enough there to warrent further investigation. Tbh, I don't know what to think- but then I am not an expert. That's what the experts are there for, you are certainly not wasting anyone's time! If you have child who has worrying behaviour - even if only at times, or even if they end up not with ASD- then any help or support you can get is worth it. Do not feel guilty, this is your child! Good luck x

TowerOfJoyless Thu 30-Jul-15 20:50:08

Hi OP just wanted to say I can understand where you are coming from as I am waiting for an Aspergers assessment for DS age 4. My feelings on whether or not he is on the spectrum seem to change on an almost daily basis and I feel my mental health has taken a bit of a nosedive with all of it.

It doesnt help when the woman who originally suggested we could pursue the assessment (Ed Psych through nursery) as he was displaying some traits of the condition then subtly tried to backtrack on this suggestion. She hadnt worked with DS for 8 months when Aspergers was mentioned. After reviewing him one week later to compile a report for the diagnostic team she later told me DS was 'like a different boy' and many issues seemed to have resolved, plus she now felt unsure about Aspergers as, in her words, 'if I was meeting him now for the first time I would not have very much to put in a report about him'. So I just do not know what to think at times.

Goldmandra Thu 30-Jul-15 20:50:35

I have DDs aged 18 and 12 who were diagnosed at the ages of 12 and 7.

Even now I sometimes look at them and think FGS, they are completely normal! Other people we meet think they are NT and I've had far too many conversations with well meaning friends who are trying to tell me to take their labels away because they don't need them. However, they both have or had much needed statements of SEN, DD1 is getting 11 hours of one to one support a week when she starts uni this year and I'm still not convinced she will cope and DD2 is struggling to cope in a very small independent school with lots of one to one TA support.

It is perfectly normal to question the diagnosis, even after your child gets one, even six years down the line after a whole year of missed school, years of medication for anxiety, CAMHS appointments and DLA and carers allowance enabling me not to work in order to look after them and have the inevitable battles for SEN support.

You've just been shoved onto an emotional rollercoaster that goes on and on, sometimes quite calmly and gently and sometimes so violently you don't think you can hold on any longer.

Give yourself time and space to process what's going on. Remind yourself that any diagnosis your child gets changes not one thing about him. It just gives him the key to support to make his life a little easier.

It's OK to doubt it. I don't think I'll ever stop.

orangepudding Thu 30-Jul-15 21:03:53

I can echo everyone else.

My DS is 7, diagnosed with ASD and ADHD a few months ago. Even though I trust the Drs who did the assessment I still have doubts, other times its blindingly obvious!

I also have an 11 year old DD. DD had glue ear as a young child. As such her speech was delayed, she was often withdrawn, very shy and ' blank faced'. Since my DS got his diagnosis I now wonder if her difficulties are actually a sign of ASD rather than glue ear.

sleeponeday Thu 30-Jul-15 22:57:18

DS has autism. He is kind, sensitive, loving, he just struggles to understand unspoken social rules and suffers terrible anxiety as a result. Very, very literal. Huge meltdowns due to sensory issues.

There are advantages. Special interests can mean a level of expertise and concentration most people can't match, and to an extent you can often channel that special interest, if you engage with it. In addition, autistic people can think in truly original ways, because they tend not to engage with the hive mind of the neurotypical person (think about how we all choose "original" and "unusual" baby names, only for that name to leap 30 places in a year because we all like the same one...). And they can be very clear in terms of fairness and justice, because they tend to be very logical. My son is a lovely person, and far kinder than almost anyone you'll ever meet. That's not my view - it's his school's, and his paediatrician wrote it in his diagnosing report as a developmental strength. It was hard to see those positives in the past because he was so unhappy he was, bluntly, often unlikeable. He is now a lot easier because I understand better. The Early Bird course, which was unlocked by a diagnosis, really helped.

I do wonder sometimes. And then we go on a holiday (in the UK, staying with family friends, taking a car full of his lego and most important toys so he can feel safe) and he is so stereotypically Aspergers in presentation it's shocking.

Autism presents most obviously when a child is unsupported, and as they age, they will be less and less supported as they move away from their families, who instinctively adjust to them. It's essential, I think, to have the structures in place to help as early as possible. A diagnosis can do that.

Goldmandra Thu 30-Jul-15 23:30:53

There's a saying that really hit home for me;

Nobody has Asperger's on their own in their bedroom.

In a safe place, surrounded by the things that make them feel relaxed and comfortable, my DDs function perfectly. It's only when you introduce other people, demands to fit in socially, imperfect communication and challenging environments, that the symptoms of AS are a problem and, even then, it's often to other people that they are the biggest problem.

What we have to remember is that, as our children mature, they will have to learn to function in more and more challenging and hostile environments. Getting the support in place early on and making sure it is tweaked regularly to keep it appropriate can make the difference to them coping just in their bedroom or also in the wider world.

HeisenbergSaysHello Fri 31-Jul-15 11:40:07

Ive been thinking about it and i definitely think that his behaviour is getting better because I'm not getting stressed anymore, i used to lose my rag when he wouldn't walk with me and would throw himself on the floor and refuse to move. So i put him back in a pushchair. I now don't feel as stressed anymore

And because in the back of my mind whenever he is being difficult i just remind myself "he's not doing it on purpose, he cant help it" and im a lot more calm, then he is more calm as a result

He is also getting more used to his pre-school and as a result he is starting to settle in although we do have an issue with biting, he hadn't done it for ages but yesterday he bit another child because he wanted a toy they had.

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