to ask what it actually means to have Asperger's? frightened mum

(96 Posts)
fabergeegg Tue 06-Aug-13 20:26:34

My little girl has a knowledgeable Homestart worker who has advised that Asperger's may be a possibility, after a disastrous playdate with a child just a month older who was utterly unable to connect with her.

She's almost two and has about ten words but uses them rarely. However she has good comprehension. She's self-contained but has good eye contact - on her terms. She's very, very aloof with other children and will pretend to be asleep rather than have to interact with them. But I've been disabled since having her so she's had very little contact with children her own age. She's incredibly stubborn and has rarely done anything I've asked her to do. The thought of her saying please and thank you is strange, although whether that's because she doesn't want to communicate/obey, I don't know. She relies a lot on inflection and is very conversational in that way. And she builds unusually high towers with bricks. She teases the dog mercilessly, though not unkindly.

I know it's too early to know anything for sure but that's not helping!

Will she be friendless and unhappy? What can I do? Is it my fault?

IneedAsockamnesty Tue 06-Aug-13 20:31:29

www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-asperger-syndrome.aspx

Can I surgest you look on the above site its quite informative and useful.

But in a nutshell you will know no different as your dd will remain the same as she always has been and no its not your fault nor did you cause it.

And home start are apsolutly not qualified to give that sort of Info and should not be doing so at all.

Levantine Tue 06-Aug-13 20:33:11

Your Homestart worker is in no way qualified to diagnose. Did she suggest that you ask the GP for a referral? Did you have any concerns before she mentioned it?

if you post on the special needs children board, you will find people far more knowledgeable than me. can't link from tablet but go to talk and the full list of topics and you will find it.

Alisvolatpropiis Tue 06-Aug-13 20:33:27

I don't have a child with Apsergers nor do I have it myself.

But from what I have learnt - it varies between each individual child and it is absolutely not your fault, it just is. Your daughter is the way she is, in some ways that's not different to a child who doesn't have Aspergers. She's an individual and although others can advise you, she will never be exactly the same as any other child.

Also from what I have seen on here - there is no reason to believe your daughter won't have friends as she gets older.

There's lots of mums on here who have child on the Autistic Spectrum who will be able to advise you better than I can. I'm sure they'll see your post and offer their advice.

Levantine Tue 06-Aug-13 20:33:53

Cross post sock

Isildur Tue 06-Aug-13 20:38:16

If your daughter is not yet two, I'd have thought it's way too early to be seriously worried.

Cravey Tue 06-Aug-13 20:39:26

She is a home start worker not a consultant. If you are concerned take the child to your gp and get a referral. And in the meantime go above her head and speak to her superior. She has no right to say this to you. I am bloody fuming on your behalf.

gordyslovesheep Tue 06-Aug-13 20:40:04

I really would question the professionalism of a homestart worker for saying that

My eldest is being assessed for Aspergers at the moment and even her psychologist and CAMHs worker wont actually say it's what she has - it's a long road to travel

BUT please don't be scared - your child, if they are assessed as having ASD is STILL the same child! In my case it's been a relief to know she's not just naughty and I am not a shit parent

If YOU are concerned see your GP x

fabergeegg Tue 06-Aug-13 20:40:50

It's not the Home Start worker's fault. I was upset and asked her if she would please tell me what she thought. There is Asperger's in the family so I mentioned it and she advised that it had crossed her mind as a possibility. It would be up to the HV to refer at the 2 year check.

I used to coach a seven year old child with it. We bonded but I've never forgotten her social isolation to be honest. She was gifted but couldn't connect with other kids.

Spottypurse Tue 06-Aug-13 20:42:25

Sweetheart your daughter is two. It's very very early to be making that kind of diagnosis. If you're concerned, go and talk to your GP. But remember. Even if she is diagnosed with Aspergers or ASD or man in the moon syndrome or yellow bettle frond disease* she's still going to be the same wee girl she always was and is and will be.

* some of the above may be made up diseases

bababababoom Tue 06-Aug-13 20:42:53

My ds has Asperger's. other posters are right, if there are concerns your GP should refer you for assessment.

Basically, Asperger's Syndrome is an Austistic Spectrum Disorder, which involves difficulties in social communication, and in understanding what other people may be thinking and feeling.

However, your daughter is very young. It does sound as though her language and social development might be a little bit delayed, but she may well catch up with her peers, since all children develop at different rates. My son was diagnosed at 5, and even that is considered young for an Asperger's diagnosis.

If she does have Asperger's, as others have said she is still the same little girl. It doesn't mean she can't do certain things, just that she will find them more difficult.

If I were you I'd talk to your Health Visitor or GP, perhaps they can refer you for a developmental assessment, which will either put your mind at rest or give you some ideas of things you can do to help your daughter with things she finds more difficult?

thornrose Tue 06-Aug-13 20:43:09

I have a 13 yo dd with Aspergers, no way could anyone have diagnosed her at almost 2 shock

I am so angry on your behalf. This Homestart worker needs to be reported to stop her "diagnosing" little children who have a bad "play date" as being on the autistic spectrum angry angry

bababababoom Tue 06-Aug-13 20:44:18

PS. My ds does have difficulty inbteracting in certain situations, but he does have friends, plays with other children, and is a happy little boy in general.

Aspiemum2 Tue 06-Aug-13 20:44:55

I'd be very surprised if any professional could make a diagnosis of asperger's at 2.
It's perfectly possible you are looking for problems that aren't there and she just isn't very sociable because she hasn't socialised much

From my experience a diagnosis of asperger's isn't normally made until the ages of 7-10

Autism diagnosis can be earlier though

Edendance Tue 06-Aug-13 20:46:28

Firstly, no- this (if it even is anything) is not your fault, and you already know this smile

Having an ASD diagnosis doesn't mean that anyone- adult or child will be friendless or unhappy. The awareness of the disorder means that we have many more ways of helping those who are affected, as well as their familes, helping them to manage the difficulties that they may face through their lives. Yes, some things are often more difficult for those on the spectrum, but some things can be easier too!

Secondly, do not assume anything. How well does the Homestart worker know your child? From her age and her behaviour that is written here I would not necessarily think anything strange is going on, however it is a very different thing to see a child in real life. I would hope that the worker has a strong belief that your child may have ASD before raising it with you as it of course can be a frightening thing to consider.

You do not say in which way you are disabled but I would urge you to make socialising your daughter a priority. It will help any child to learn how to be sociable with other children, whether it's a playdate at your home or someone elses, a playgroup or a nursery school, an environement which involves sharing, co-operation etc is imperative.

She is still so young, and they are so different at that age group that it's hard to judge. A red flag for me would be a lack of eye contact and speech and you say she has both of those things. There is a reason it's a 2 year check now- and that's because so many things change in that time period of 12-24 months.

My advice to you would be- try and socialise her as much as possible, as mentioned earlier. If she has language but is reluctant to use it then you really need to encourage this. Put things out of her way so she has to come to you to ask for it; this encourages appropiate communication. You say her understanding is good so make sure if she is holding back on speaking or whatever, that you explain to her why she needs to do it- 'you need to use your words to ask for things otherwise nobody will know what you want'. Give her power by speech- when she verbally asks for things (even if you have to request that she asks) then honour it as much as possible (within reason!) especially at the beginning.

Finally, try some intensive play sessions where you play together with something like a dollshouse or car garage or play kitchen where you can do lots of describing and vocal things with what you're doing. Songs can also be a great non-pressured way of encouraging speech.

But really, try not to worry too much-especially at this stage. It could be worth popping into see your GP for a second opinion, that may help your discuss your concerns. Perhaps you could ask for a double appointment so you arent pressured for time?

smile whatever happens, it'll be fine.

pudcat Tue 06-Aug-13 20:47:22

As a Nursery teacher I was not allowed to say that I thought a child was on the autistic spectrum, which is quite right as it must be done by a medical practitioner. We could tell the parents that we had concerns about areas of their development and help to put the process in place.

thornrose Tue 06-Aug-13 20:49:43

pudcat spot on! When my dd started the nursery at school flags were raised but no-one actually said AS.

McNewPants2013 Tue 06-Aug-13 20:52:36

My son started showing signs before the age of 2 of autism.

It has been a never ending road to get a diagnosis ( it took 4 years)

It hasn't changed ds at all.

Even after all this time ( he is 7) I still don't know what I am dealing with even after all this time.

If you have any concerns I would get a referrals ASAP.

BeaconTent Tue 06-Aug-13 20:55:33

my DD wasn't diagnosed until she was 17 and even then it took nearly a year of assessments by a number of professionals. as pps have said there is no way this would be diagnosed at 2 and certainly mot by a lay person.

to give some perspective though DD was always on the edges socially but is now 19, at performing arts school, learning to drive and has a boyfriend and a great group of mates who share her passion for performing. She is finding her niche now and its fantastic to see her bloom.

The only advice I'll offer is to speak to your HV or Gp if you're really concerned.

pudcat Tue 06-Aug-13 20:57:53

Diagnosis must be done by qualified medics and child psychologists. Same with dyslexia ADHD etc. It is so wrong to frighten parents, sometimes unnecessarily.

nlondondad Tue 06-Aug-13 21:02:51

Autism can be diagnosed as early as two, normally because of very obvious autistic behaviours which the OP's child is NOT showing.

Asperger's is diagnosed much later, and some adults do not get a diagnosis until their fifties...

Children develop at different rates, the social skills deficit present in Aspergers can therefore only be spotted when it is clear that it is a fixed disposition and not a passing behavioural delay.

Having said that an early diagnosis of Asperger's can be very helpful as many people with Asperger's once appraised of the issue are good at developing work arounds which help them get on -at least to the extent they want to- with neuro typical people.

So:

1. Your daughter probably does not have autism disorder -but perhaps have her hearing checked?

2. If she does, there is no reason to believe that she will not be happy and fulfilled, well at least as much as any of us manage!

formicadinosaur Tue 06-Aug-13 21:05:49

Look on the national autistic website. There is a check list you can use.

I agree your sure start lady is not a professional and cant make an official diagnosis. However if she is concerned and you see her reasons are valued, then take your child to the GP. The quicker you get a diagnosis, the better for your DD. Everyone will be able to support her appropriately.

As with everything there are different degrees. I know two high functioning friends husbands with autism. They are married with kids and successful careers. I also know some lovely young people with complex needs including autism. They are taught in a special school.

pudcat Tue 06-Aug-13 21:15:31

Asperger syndrome wasn't given any recognition til the 80's, so there are older adults around (my hubby is one) who have symptoms of it without being diagnosed, and he is just regarded as a bit eccentric.

Thesimplethings Tue 06-Aug-13 21:16:25

I second what others have said. It is far too early to put a diagnosis on a child.

Most children at 2 play alongside others and don't interact that much unless it is to fight over a toy.

At three or thereabouts they start to hunt out their peers attention for games etc, coinciding with development of imaginative play.

I found this true of my ds1. I worried so much about him being on the autism/aspergers spectrum due to his speech delay, late to hit milestones, preferred to play with older children etc. what I didn't realise was he was being unintentionally held back due to having a 16 month age gap between him and his sibling. Dc2 suffered terribly with reflux and most of my time was taken up with him and cleaning vomit, didn't sleep at all in a night etc.

Now at 3.3 he is social, interactive and loving. Things change in a short period.

If you are worried seek professional help

fabergeegg Tue 06-Aug-13 21:26:16

Thanks for this advice. I'll call the HV tomorrow and also make an appointment to see the GP. Please keep the positive stories coming!

Spotty purse smile

For the record, our Home Start volunteer has a lifetime of working with children and stressed she wasn't a medical professional. I don't know what she was supposed to say but the truth, really.

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