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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think it isnt Aspergers

86 replies

Eggandhashbrownbutty · 01/09/2019 08:03

my Sister seems to think my niece (2 year old) has Aspergers. She is going to check her checked by her gp or whatever the procedure is (sorry, I’m not familiar with how you get a diagnosis)

She can speak but says very few words, yes, no, shark, ball - and she knows what things are for instance if I say where’s the chair? She will point to the chair/baby/bed/cat so she is quite intelligent. It’s just her speaking she is struggling with.

She is due to start nursery next week and prior to this has been in full time care of my sister who is a great mum to her and has tried and tried relentlessly to get her to start talking. She uses word cards to help her learn words and my niece does follow her lead with this. My sister takes her out to socialise with other children and she doesn’t have a problem playing with them, she can be a bit shy at times but overall I would say she is just like any other child. Bit IMO I think she will come on leaps and bounds with speaking once she is around other children for longer periods.

My sister seems to think it is something more than just being a bit delayed and has googled and come to Aspergers. My sister says my niece has a funny walk (never noticed this myself) and trips over her feet quite a lot and is a bit unsteady which is meant to be a symptom of Aspergers tears or autism. I assume there are other things which makes her think Aspergers but she only mentioned tripping up and delayed speech.

Can anyone offer any advice? I think I have included everything as not to drip feed.

OP posts:
sugarplumfairy28 · 01/09/2019 08:44

We are currently in the long winded process of getting a diagnosis for a neurological disorder for our DD, she is 8.

Because everyone can present differently its very hard to 'tell' as an outsider. Our DD falls into many different diagnosis' for example, however there is a specific test for ASD that your niece will undoubtedly have to go through.

Personally I wouldn't jump to Aspergers from a speech delay and tripping over simply because a speech delay could just be a speech delay, and tripping over could be growth spurts or muscular or orthopaedic problem, what I'm saying is there are many different explanations out there, so I do understand your concern. But having a quick google, one of the first results which gives an incredibly simplified overview of Aspergers may be where your sister's concerns started.

Having said that, read up on how to get a diagnosis and try to be knowledgeable in order to support your sister, it could be ASD, it could be something else but it is complicated and ignorance is the enemy.

merrymouse · 01/09/2019 08:46

the advice I am hoping for is anyone who has had a similar experience. As I mentioned in my op I’m not familiar with it all.

Nobody can tell you this because we don't know your niece.

Her mother is best placed to judge whether her daughter needs additional help and if your niece needs speech therapy, your sister is wise to get her on the waiting list now.

Diagnosis of Aspergers takes years and would include feedback from nursery, and in all likelihood school.

The one thing I would say is that you seem to be thinking very much in terms of diagnosis, when the important thing is that your niece gets the help she needs.

Eggandhashbrownbutty · 01/09/2019 08:47

Thanks for your advice, I will pass back to my sister :)

OP posts:
Thewheelsarefallingoff · 01/09/2019 08:47

My DD was like this and I think she has mild dyspraxia. She is 8 and we haven't got very far in accessing support. We've just paid for a private educational screening session, which showed a high probability of dyslexia. There was no testing of gross motor skills, so dyspraxia was not really tested.

Kplpandd · 01/09/2019 08:53

My daughter is autistic and the first thing I noticed was that other kids her age could have conversations whereas my daughter couldn't. She could say the alphabet, count but could not talk to other children.

She also didn't walk but sort of galloped everywhere and hated certain noises such as the sound of the post office till and the sound of other children singing, should put her hands over her ears as if it was painful.

Theres no harm in seeing a gp although jn my experience they will fob her off.

The worst thing you can do is tell her that her daughter isn't autistic.

Venger · 01/09/2019 08:54

As well as the advice given by everyone already, please don't say things like this:

"She will point to the chair/baby/bed/cat so she is quite intelligent"

Autism and intelligence are not mutually exclusive, it is possible to be autistic and very intelligent.

TheNoodlesIncident · 01/09/2019 08:56

I was in this position of having concerns about my dc. I delayed seeking professional advice (although I did ask other parents what they thought Blush ) and just worried a lot.

So my advice to anyone concerned about their child's development is to seek professional advice promptly. This is what your sister is doing, good for her. It's the right thing to do whether the child turns out to have the suspected issues or not; there may be something else or nothing. The best thing you can do OP is be supportive throughout, whatever the outcome.

pictish · 01/09/2019 08:59

Why are you even involving yourself by way of an opinion?
I don’t mean to be rude but it’s not your child...this is entirely her mother’s call. Who is better placed to notice and raise concerns than she?!

Leave her to do her job and see what emerges. The gp is exactly the right place to start if there is any condition to know about, including ASD.

lululatetotheparty · 01/09/2019 09:01

Your sister clearly has a concern and I would respect her instincts as a mother. It may not be ASD but she is absolutely right to start investigating now so that your DN has all the support she needs if indeed she needs any. I hope you can support her.

Eggandhashbrownbutty · 01/09/2019 09:02

Apologies if I caused any offence by the pointing comment, really was not my intention to insinuate that anyone with autism is not intelligent.

OP posts:
99problemsandjust1appt · 01/09/2019 09:03

Being highly intelligent doesn’t rule out autism. I know this from bitter, bitter experience.
How smug was I with my talking from SIX MONTHS baby. How I laughed at those who recoiled, I thought they were jealous.
I was furious with the mums at toddler group who said my child ‘shouldn’t be doing that’ again thinking jealousy.
She hated other children would vomit if had to eat with them I thought she just had better table manners and was a bit sensitive. Various other issues like this.
I was so proud all through primary how she was on the gifted and talented list etc and how she excelled and meanwhile I did not notice how she struggled elsewhere because I was blind to it.
She got a scholarship to a great school totally paid for as she got the highest marks possible. Then she had a TOTAL breakdown and nobody could work out what was wrong until camhs unpicked everything.
It took 2 appts for a diagnosis of ASD and we have been dealing with a teenager who cannot function at all.
She got marks in the top 2% for her English GCSEs (the only ones she would do as refuses to do anything she won’t be the best at) but she cannot cope with day to day life.
Early development and speech may or may not be an indication of asd.
OP your sister is doing the right thing with your niece I certainly wish I had been more observant to my child’s issues so please encourage your sister and be guided by the medical professionals

NightWakings · 01/09/2019 09:09

I had concerns about my DS at this sort of age. Nobody (including DH and my DPs) would entertain them. I continued to have concerns, which were dismissed by my HV, GP, nursery staff, teachers and family members. It took until DS was 8 for anyone at all (including DH) to agree that there was something which should be looked into. It took until DS was 10 for this to be the general consensus among his teachers and medical professionals he saw. He’s on the ASD pathway now but still undiagnosed (and like other posters’ experiences, things and become very difficult for him).

I think the best thing that you can do is listen to your sister, and enjoy your relationship with your niece. You don’t need to do your own research or be proactive, but hear her concerns and don’t dismiss them or reassure her that there is “nothing wrong” (even if it comes from a good place). I couldn’t really pinpoint or articulate exactly what I thought was different about my son as a toddler, but I had real concerns, and the amount of resistance which I met when I tried to express these just added a new element to the fight which I could have done with out, and which still affects family relationships.

EleanorReally · 01/09/2019 09:15

as said, it can take years for a diagnosis, fingers crossed for her it wont take long
look up the symptoms yourself op.

EleanorReally · 01/09/2019 09:17

hopefully the nursery will also be clued up

pictish · 01/09/2019 09:38

No one knows like a mum knows. I know that’s a cheesy thing to say but in my case it certainly applies.
I suspected ds2 of ASD from the age of two. A referral to speech and language at nearly 3 seemed to negate my suspicion but I continued to harbour it.
My dh didn’t want to address it and my in-laws thought I was being dramatic. I respect all of their opinions as they are intelligent people but I had (and still have) more knowledge on the topic than they do so I listened to my own instinct over their doubts.
I decided to revisit my thoughts when he was 8, having given him time to grow out of some of the behaviours that may indicate ASD...or may simply be synonymous with being a young child.
After a two year process of assessment during which practitioners hummed and hawed over a diagnosis, as indeed did I, they concluded that yes, he is on the autistic spectrum.

What this will mean for him in the future I can’t be sure. He will be 12 by Christmas and so far remains a happy, engaging boy who has sustained friendships and excelled academically. He is a clever little chap and kind and decent with it.
How it goes in puberty and high school is another bridge to cross. Should he require support in that setting and stage, the diagnosis is there to facilitate it.

I don’t regret being the mum who knew.

Punxsutawney · 01/09/2019 09:42

99problems it's very difficult 💐. Ds is also very bright but he will not reach anywhere near his potential next year in his gcses. Our quiet, bright but quirky boy in primary now struggles to function properly at all in secondary. Those young people that go undiagnosed and unsupported until their teenage years can really fall apart when the pressures of secondary school and puberty hit.

Nonnymum · 01/09/2019 09:43

Has her health visitor expressed any concerns? Is she just 2 or almost 3? It's not unusual for 2 year olds to havs only a few words but by 3 it's a little different. Having said that a lot of children are speech delayed it doesn't mean they have aspbergers. With SLT they are fine.

dollydaydream114 · 01/09/2019 09:51

Perhaps you could just let your sister get on with it rather than poking your nose in?

It’s not your child. You are not the parent. This is between you sister and the child’s doctor.

Proseccoinamug · 01/09/2019 09:53

daffodil101 that just isn’t true.

The difference between a diagnosis of Aspergers Syndrome vs High Functioning Autism used to be the absence of language delay in Aspergers Syndrome. That doesn’t mean no developmental issues or delay in any areas.
Now, the diagnosis of HFA would be applied to both, regardless of early language delay.

OP, your opinion really isn’t helpful to your sister. Please don’t ‘pass on comments’ to her, I would be furious in her shoes.

I have a diagnosis of High Functioning Autism. So does one of my children. I can guarantee that if you met either of us you’d say there was no issue.

Your sister is doing the right and sensible thing in following up her concerns and asking for her child to be assessed. What is your fear? What harm can this do if there isn’t a diagnosis? And if there is, it’s so beneficial to have that diagnosis.

Please step back and just support your sister. It’s not your role to find the information or decide whether assessment is justified. Your role is to listen and support and definitely not contradict her.

mamaraah · 01/09/2019 10:25

My dd1 was just like this as a toddler ( limited speech etc) she was diagnosed with autism one year later. tHis involved the nursery, our gp, educational psychologist, paediatrician, sen team, play specialists, speech therapists and eventually our local primary and sn school

It's a long process to get a diagnosis ( and we want the quicker diagnosis route) leave her mum alone. She is doing the right thing and is concerned for her child. It's none of your business so butt out.

mamaraah · 01/09/2019 10:25

Also our health visitor was involved

CaptainCallisto · 01/09/2019 10:40

I first noticed issues with DS1 when he was 2. Speech delay, brilliant at puzzles etc, didn't like to play with other children, clumsy... I was told by everyone, including HV and nursery, that I was paranoid and that he absolutely 100% wasn't autistic because he did X,Y and Z. I thought "these guys know what they're talking about, they must be right" so I didn't pursue it then.

He's just been diagnosed at 7 (after two years on the waiting list!), and the report stated that he more than matched the diagnostic criteria across the board, and that it was a very easy, obvious diagnosis to make.

You have no idea how much I wish I hadn't listened to all the 'experts', friends and family who told me he was just shy/quirky/only a bit behind. He could have had support in place five years ago if I hadn't.

duffyluth · 01/09/2019 10:42

My autistic DS scored a bunch of A's in his exams this year. He is very intelligent.

Your thread title suggests you don't agree with your sister seeing someone about her child's development. Why is that?

BlankTimes · 01/09/2019 11:20

ProseccoinaMug said Please step back and just support your sister. It’s not your role to find the information or decide whether assessment is justified. Your role is to listen and support and definitely not contradict her.

CaptainCallisto said You have no idea how much I wish I hadn't listened to all the 'experts', friends and family who told me he was just shy/quirky/only a bit behind. He could have had support in place five years ago if I hadn't.

Please heed the very good advice you've been given by the above posters and by most of the other posters on this thread, too. Family members, friends and professionals who insist a child is 'fine' when Mum knows different are beyond contempt. They hinder the processes that are in place to help a child and undermine, belittle and devalue the Mum's insight into her own child's needs.

All you need to do is be supportive, keep your opinions to yourself.

Mums in your sister's situation often post on MN, they know something is amiss yet everyone they know including GPs teachers SENCOs, relatives qualified in medicine, relatives who work with kids with ASD, all say the child is "fine"
My advice for those mums is always do not give credence to anyone unless they are qualified to diagnose autism in children.

This may help you to understand a little of what autism is the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Greeni · 01/09/2019 11:23

A diagnosis can take years and involves multiple assessments from multiple professionals, she’s not going to go to the gp and get a diagnosis.
Either she’ll do great at nursery and catch up with speech or will struggle and be referred to salt.