Hard decision to make, advice needed

[smurff]

Hi, my gorgeous princess is 4yrs old, is globally delayed with learning difficulties. We have been told by a few peadiatrions that she's also autistic and health workers who have autistic children themselves.
We wanted her tested for autism but they said she was to young. When they explained why it made total sense but now she can be tested if we choose but we're totally confused what to do.
The problem is learning difficulties and autism are very very easy to get mixed up, we could get her tested and be told yes she's autistic which would go on her medical records. But in a few years time she could totally catch up with everyone and everything will fall into place, and it could easily turn out that they got it wrong and she wasn't autistic but was just behind. The prob is if that happens and the diagnosis of autism was wrong it would still remain on her medical records and could effect her in later life. We were told this by a few peadiatrions. Plus she has amazing support and can amazing big team around her, I can honestly say they are the best bunch of people I could ever have wished for so if we were told she autistic it wouldn't change anything cause we already have the support in place.
My husband wants her tested and I'm 50/50, I'm fed up with explaining to people that she has learning difficulties is delayed with possible autism. Any advice would be appreciated

 

[Take2]

I have no advice sorry, just stalking because I've been advised to have an autism assessment done on dd2 who is 2 years 8 months. Curious where you are and what behaviours/delays/signs your child has?

 

[smurff]

Hi, I'm in the south West UK. My daughters development is at around a 2yr old stage. Hates loud noises, if she knows something g makes a noise she won't want to go near it. Doesn't know how to play or interact, didn't have good eye contact, hits herself on the head if frustrated, limited speech, repeats phrases over and over but will stop if I repeat them back to her, flaps her arms and legs when excited, likes going under a blanket, isn't potty trained, needs help down steps, likes to press her cheek against mine as she has sensory issues Aswell, needs help dressing and undressing, Is often in a world of her own, if she wants something but can't have it we have full melt down, is amazing with anything technical, is extremely switched on and hears everything, loves singing and cuddles, has just started telling me if she's thirsty and can now point to things she wants. Has no idea of personal space and no awareness of any dangers. Likes to line up toys and always likes a toy in her hand.
I'm sure there's more but can't remember now.
Reading that back makes her sound like hard work but she's a dream to look after. She is the sweetest little girl, she loves cuddles and is so caring, she is amazing and takes everything in her stride. I'm amazingly proud of her

 

[Take2]

Thank you for your detailed reply. It's so difficult for me to know if my daughter may have autism, some of the things you described I totally see in my daughter but other things not at all. My daughter does play with other kids but prefers her interactions 1 on 1, she will withdraw if there is more than 1 child. My daughter also has great eye contact, her speech is behind but it's there and it's improving tho she does repeat phrases over and over until I say it too. She doesn't flap tho or any other stimming behaviour tho she licks her lips and blows spit bubbles a lot, and if she gets a sticker she puts it on her mouth? Her motor skills are really good though so that's not an issue. I really just don't know!
What is your specific concern about a possible early diagnosis being on your daughters medical records? I hope you get some more clarity in your situation one way or another soon!

 

[smurff]

I'm obviously not a doctor and the autistic spectrum is huge but your lo seems like a shy little girl who doesn't like playing with lots of children. My little boy licks his lips and put stickers in his mouth and he's not autistic. I know how you feel, once you have that niggling doubt in your mind it's hard to get rid of.
The only reason I'm worried about having autism on her records is because in later life it can stop her doing things she may want to do, I think I'm right in saying there are certain jobs she couldn't do which is fair enough if she is autistic but if they get it wrong she'll still be stuck with it on her records and she'd be stopped doing something she may want to do cause of a mistake from when she was 4yrs old

 

[Take2]

Thank you for your reassurance, I'm not convinced she has autism either, honestly it won't bring me undone if I were to be told she was, I obviously would prefer her life path to be less challenging than that of an autistic person but we adore her quirks and all and if it gave us the means to help navigate her way through these challenges than call it, but I truly don't feel she really fits the profile.
If they did diagnose your daughter than it later proved to be incorrect would that not be on her record too, would it not be clear to future employers that is was indeed an error? I do understand your concerns, you have a responsibility to her future, perhaps wait another 12 months and reassess?

 

[alibaba24]

Could you compromise with your husband and suggest testing for autism when she's a bit older ? So it's not off the table completely? You shouldn't feel you need to justify everything about your dd. Can you ( if you feel you must) say she has learning difficulties? You dont have to go into all the specifics. My paed told me if my dd grows up and her asd traits arent affecting her life ( they arent) then it woulf be unfair to label her. But if they were affecting her in s negative way a label can be useful shes 6 just now and they arent even putting her forward for autism testing as shes showing lots of catch up x

 

[lusterleaf]

Hi, my son was diagnosed when he was 19 months so I am not sure why they are saying she is too young to be diagnosed. I am in the US though so maybe things are different here. I am not concerned with it being on his record, A friend of mine who's son was diagnosed at 18 months might have the autism diagnosis dropped of, now they think he might just possibly have ADHD. All the diagnosis means here is that they are eligible for more services, to me that is a good thing because that means more support is in place. She actually is hesitant on them dropping the diagnosis because she is fearful that they will take some of his services away. Does your daughter get any services currently?

Also I wouldn't be too concerned with her not being able to get jobs and whatnot in the future. To me it is a medical condition that she would only be able to disclose herself- I've never been asked from an employer to provide medical records.

 

[smurff]

Thanks everyone you have all given me alot to think about. My daughter has every service she needs, she has speech therapist, educational physiologist, she attends a specialist school and has extra funding in place, peadiatrion lots of specialist teachers.
As for her medical records i never thought if they make a mistake that I could get it removed , that's a question I can ask.
When I said about it effecting a job she may want I was thinking about if she wanted to join up or genuinely a career when you will need to provide them.
My daughter is showing signs of improving alot so maybe they still won't test her?.
I really don't want to label her at all but sometimes there are circumstances where I do have to explain things about my daughter.
It's a tough one, think it's best if me and hubby have a few hours to ourselves and go for a meal and discuss it. Thanks again everyone

 

[Button#]

I have similar with my DS and we have decided not to go down the testing route. My OH works with a lot people who are involved in this area who have said not to get testing done. We are fortunately in a position where we can pay for SLT and OT privately and he's in a mainstream school which has a lot of in house support for SEN even without a diagnosis.

If your daughter already has the support in place and it won't add anything then I wouldn't, at least not until she's older.

 

[AP]

Just a thought, but isn't this the reason the triad of impairment is referred to when it comes to autism testing? Autism diagnosis isn't given out easily either, especially with young girls.

 

[mbg81]

I agree with Button- if your daughter already has the support in place and having her diagnosed will not provide her with anything extra- I would wait to get her tested. My daughter is delayed in speech,has sensory issues and feeding issues. Refuses to eat anything but a handful foods. Has problems with getting hands dirty, hates walking barefoot, etc. Currently she's in occupation therapy for feeding/sensory problems and speech therapy. My pediatrician thinks autism and wants me to see developmental pediatrician so she can get diagnosed. So I asked her if this diagnosis will benefit her in any way and she said no but 'at least we'll have a diagnosis'. I think my daughter is too young to diagnose (3) and don't want to label her incase she's misdiagnosed. I feel the same way as you and am concerned about how this diagnosis might affect her in the future. So I decided to wait since she's getting all the help she can already. I would say that in the last 6 months she has progressed a lot and I'm hoping she will catch up to her peers.

 

[Snowball]

My son was diagnosed with autism, global development delay and sensory processing disorder when he was 3 and I was told by his nursery that that was late-ish (he was already in a special needs nursery at the time as he was non verbal). I've had a lot of support since his diagnosis and 2 years later he is now talking more and more and able to understand simple instructions

 

[smileyfaces]

I'm actually a little shocked that they have said that an autism diagnosis can be easily mistaken for learning difficulties and it may turn out that a diagnosis has been incorrect? The testing here is rigorous and if there are any doubt's at all they would not diagnose! Seems very odd.

Wishing you all the best for whatever you decide x

 

[Reid]

I 2nd what AtomicPink has said and smiley faces.
Autism diagnosis in Scotland isn't giving out lightly and is done by a team of professionals. Should 1 of them raise any doubt the diagnosis won't be giving. I'm really shocked to they said it could be mistaken for a learning disability
My son was diagnosed last year when he was 4 so I can only say from our personal experience. It's a lengthy process that involves alot of different health care professionals. Alot of information is taking from alot of different resources including from yourself before a child is even assessed
Having a diagnosis for my son helped me secure him a place in the specialists school in wanted him to go to. His development has come on a great deal

 

[Nela]

Hmm I find the comments from the professionals rather odd, to be honest. While certain learning difficulties can come about with autism, they aren't so similar that they are difficult to distinguish. Autism Spectrum Disorder is primarily a social communication disorder, completely unrelated to learning difficulties. In fact, many high-functioning ASD children perform at or above age level in academic standards. From your description, I sense Sensory Processing Disorder is a good possibility given she doesn't like noises and that is very common with ASD children. The spitting can also be sensory, more than stimming. Stimming is an autistic trait, but not a diagnostic one. How is your daughter with changes in general? Changes to routine, repetitive behavior? More importantly, what is her communication like? Can she interact with children her age? Not just adults and older children as those are more accommodating, but specifically children her age. How is her pretend play? Can she create stories, use imagination? ASD children don't have to have a more challenging future. In fact, that is why I think it is so important to have it evaluated and diagnosed if it is there. The reason simply is that it is handled very differently as their way of processing is very different. Once you know that, it because a lot easier to help them make that progress so that they can flourish and really find their confidence and comfort. We all hate labels but there are real practical reasons for them to be in place. It is good that she has access to all sorts of services but you also want to be sure they are the right methods and they are targeting the right things. A child misdiagnosed with ADHD when they truly have Sensory Processing Disorder will struggle for a much longer time and runs a much greater risk of needing unnecessary medication, for example.

Wishing you all the best and if you do decide to have it looked into, just make sure you have good professionals to check it with.

 

[smurff]

Thanks again everyone, still waiting for her peadiatrion app to come through and yes we're still unsure what to do.
We went through her last peadiatrion report from 6mths ago and were shocked to realise that they mention autistic features on her diagnosis!, I think if they say it's not to early to test we will go ahead with the testing.
Now my second question, I know it's a long process but what happens when they test for autism?