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?

Alisvolatpropiis Tue 06-Aug-13 21:26:49

Although the homestart worker might not be officially qualified to say it, the OP has said herself she asked because she was worried.

I don't think you always do need to be professionally qualified to recognise particular behaviours.

But by the same token I was by no means a sociable child or adult and it isn't because I have Aspergers, I'm just not sociable.

If you are concerned, take her to your GP and see if they think there might be anything in your concerns.

maddening Tue 06-Aug-13 21:32:16

I don't think you can take one playdate and someone not qualified to make a diagnosis means she is right and nearly 2 is v young!

ds was an early mover and late talker. He is also a warmer upper - at baby groups I worried he didn't join in and shouted at me during singing time and would just run around the library at rhyme time - but towards the end he would come out of his shell - but then the group would be over. And at 2 had few meaningful words but now he is at nursery and is there for longer than an hour his speech is coming on (and late talkers run in my family - my nephew was a late talker, my uncle only spoke at 3 (and is a professor of English) and plays wonderfully. He role plays a great deal too.

ds isn't talking properly yet but it's coming slowly- am not worrying too much. And the play thing is normal for 2 to not totally play with other dc.

maddening Tue 06-Aug-13 21:33:58

ps ds is 2.5 now

DayBurner Tue 06-Aug-13 21:34:03

My DS was diagnosed with ASD at 22 months, and Asperger's was confirmed at 3.

Tiggles Tue 06-Aug-13 21:41:25

As you have asked for positive stories...
DS1 has Aspergers, DS2 has High functioning autism.
DS1 was house captain for his final year at primary school smile
DS2 who was non verbal at nearly 3, threw tantrums if you tried to interact with him, is now a very chatty loveable 6 year old with a very close best friend.
I'm not saying things are a piece of cake, they aren't but things could be a lot worse!
Having said that, as everybody else has said, a homestart worker a) shouldn't be making that sort of comment and b) really shouldn't make that sort of assumption on one viewing of a play date.

Cravey Tue 06-Aug-13 21:48:11

Op when you asked her what she thought then her answer should have been that she is two. Most two year olds are the same with interaction. I really think she has scared you more than you already were.

rumbleinthrjungle Tue 06-Aug-13 21:50:41

I've worked with paediatricians specialising in children with developmental difficulties and have heard them say over and over again to many families, it is never, never because of something the parent did or didn't do.

This lady had no business scaring you like this, any autistic spectrum diagnosis is a medical diagnosis made after a period of discussion and observation between parents and a paediatrician, and probably a speech therapist would be asked to give advice too. Many children who show signs early on turn out not to have autism. I'd suggest getting straight on to your health visitor and ask for a visit and a chat for some support, and then ask her or your GP to make an urgent referral for you to the community paediatrician, saying this has been said to you and obviously you're very worried about it and need to talk to someone ASAP. Go straight to the expert who can meet your child, talk with you frankly about this suggestion and give you the proper advice and support.

I've worked with many children with autism who are happy at school and home and have plenty of friends, there is a huge spectrum and no two children are ever the same, your daughter's personality, likes, dislikes, who she is, is by far the biggest influence on her and if she needs extra practice and help at any time to learn how to play with her friend then you'll help her. You're obviously a very caring and proactive mum or you wouldn't be worrying like this!

Hugs to you, I'm so sorry you're having to go through this.

Marzipanface Tue 06-Aug-13 21:59:30

At the age of 2 my dd would have spent the whole playdate hidden under a cushion.

She would cry and cling to me whenever other children were around. She would freak out about noises. Cars, singing, other children playing. Everything was 'too loud', her fingers were in her ears whenever she was out of the house. She had issues with textures and would refuse to wear clothes in the house. She barely said a word to anyone other than very close family. Nursery raised concerns about her.

She was obsessed with numbers and puzzles and could read/recognise the whole alphabet before she was two.

She is now 3 and half and has changed so much! Sociable, chatty and the noisiest little thing I know! Nursery have no worries at all. She still is obsessed with numbers and letters though!

MumnGran Tue 06-Aug-13 22:15:26

I would actually report to HomeStart.
Her comments went way beyond the remit, regardless of the qualifying statements that she isn't a medical professional.

If she repeats the conversation at any point OP, I would advise saying that as she is not qualified to make that diagnosis she should keep her opinions to herself.

MumsKnitter Tue 06-Aug-13 22:52:13

I'm so glad you are defending your Home Start worker. I don't know what else she was supposed to say either, that would have been the honest answer you had asked her for! That said, lots (perhaps even most) two year olds don't really socialise with peers yet, so two is really too young to be able to hope to get an accurate diagnosis of Aspergers. I say hope, only because if she does have it, then as has already been said, the earlier it is diagnosed, the easier her life will be. I don't think, however, that there is any point in chasing a diagnosis at this very young age, as I cannot think you would succeed, even if she does have it. You might want to read up on it, but only if you think you'll be reassured by greater knowledge, and not just worry more. Depends on who you are.

I have Aspergers, and have four children who all have some features of Autistic Spectrum Disorder, including one with Aspergers, and one with high functioning autism. I really had to fight to get a diagnosis for my DD1 at age 7 of Aspergers. It is heavily underdiagnosed in girls. I had to insist on a second opinion. I remember once that she hid in a wardrobe when I invited two class mates round to play. I learnt that she could cope with one child, but not with two at once.

Don't beat yourself up about not having been able to provide many social opportunities for your DD. She is still very young. If it's very difficult for you to manage, and unrewarding for your DD, I wouldn't worry about it. She'll have lots of opportunities soon enough. My DD just used to stress when very young, but coped much better when older. Just practice lots of turn taking games with her at home, as the ability to take turns is both necessary for conversations, as well as the most important skill for little ones to play together well.

I would also suggest that you encourage all forms of communication, and not insist that she be verbal. I bought a book on Signing for babies, and found using a few simple signs encouraged progress in speaking too. Always acknowledge that you understand her, however she communicates - even if it just by her facial expression. I remember following the then current advice to encourage my DS (with autism) to speak by pretending I didn't know he wanted a drink when he tapped the dishwasher (for his favourite cup). He found it very frustrating and immensely upsetting, and simply withdrew.

My DD1 is now 22, just graduated and going on to do a Masters. She has friends, and is very happy in a relationship. The day she got her diagnosis was a good day. She was still her, but with added understanding!

Who knows whether your DD has Aspergers or not? We can't tell you. I hope not, as it can't be denied that life is much easier without it. It really is too soon to tell. There is a good chance that she hasn't. Try not to worry too much!

colettemum3 Tue 06-Aug-13 23:36:09

UGH Silly Homestart person. I would go and ask for an referral to a pediatrician and also to a speech therapist. The earlier the better in regards to waiting lists. If there any sign and sing groups near you that you can join.
Nearly 2 is not too early for speech therapy intervention.

Also if the home start person goes sprouting Aspergers to you again, it's your turn to educate her. As you read above Aspergers is hard to diagnosis at a very young age. If your daughter has autism then it's more likely to be referred to as autistic spectrum disorder. If it's mild then it may be referred to as high functioning Autism. (I won't go in to the others that fall under the ASD umbrella).

http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/high-functioning-autism-and-asperger-syndrome-whats-the-difference.aspx

Well I'm going to go against the grain here & say if you have concerns get them checked out & don't let anyone fob you off with it bring too early. Autism can be dxed from before the age of 2 & the earlier you get support the better really (you being if a child has ASD - not you yourself).

There's a video database showing ASD versus typical behaviours on an American website. I'll try & link in the next post. FWIW I began to suspect autism in my son at 17 months - despite good eye contact & him being very affectionate & friendly with adults. He was eventually diagnosed age 3 although we had to push a lot.

Also worth checking out the M-CHAT test - that's a good screening tool for young children. It's not diagnostic but it helps identify children who need further assessment.

Here's the video glossary & the rest of the website is very good as well www.firstsigns.org/asd_video_glossary/asdvg_about.htm

PoppyWearer Tue 06-Aug-13 23:50:18

A positive story for you!

I suspect that I have Asperger's, have read about it and done online questionnaires which seem to point that way (strongly) although not a formal diagnosis. I have always known that my brain works differently to those of other people.

From what I've read, Aspie girls cope better than boys because they/we learn to "act" the way they/we are supposed to in social situations during teenage years. This is absolutely what I did and still do. I'm still very awkward in social situations but "rehearse" things in my head and cope ok. I have a decent enough social life, am married, and have DCs who seem to be a lot more confident than I was at their age, have lots of friends, and neuro-typical as far as I can tell.

I also have an Oxbridge degree and a successful career behind me before becoming a SAHM. I even passed my driving test (eventually!) in my late-20's.

Ok, no formal diagnosis, but I am convinced I have Asperger's and....I think I'm doing ok.

colettemum3 Wed 07-Aug-13 00:17:47

Another thing..... there are people that may spend 'lifetime working with children' and know complete FA about special needs.
The fact that she said Aspergers to you when 1) your child is not quite 2.
2) Your child has less then 10 words.

Sorry if i seem mean but i just read back and read the lifetime comment and it bought back a nasty memory.

When my DD was 6? (now 14) was at a (nasty) infant school and i asked for the head teacher to sign a section in the DLA form. She turns around and says "your daughter doesn't have a disability".

At that time my daughter had a statement that said moderate/severe verbal and oral motor dyspraxia and ADHD. Was getting weekly speech therapy and had up to 20 hrs support.

Thankfully her junior school was amazing and totally turned her round. At that time it had a fantastic head and deputy teacher. I had her assessed for visual stress and she got coloured lens. At the end of year 5 she lost her statement as frankly she didn't need it.

She's now doing really well at school and got really high marks in German and French. But is now going through a Kevin phase out of Harry Enfield.

I've got a 15 DD who's on the spectrum, has speech and lang difficulties (mainly lang now - although also had the verbal and oral motor dx when little). She's just recently been dx with Tourettes. She goes to a special school and she be starting 5 GCSE's in September.
She was taught how to sign when she was just under 3 years old. Every school she has ever been to has had some signing to it.
So i taught her signalong, first 2 schools/units used Paget Gorman. Then her crappy residential school supposedly used Makaton. Pulled her out of said crappy school last July and now goes a nearish day school that uses BSL. She's now very sportly and has won awards for it at both her old school and her new school in the last 2 years. She loves martial arts and now does boxing. Hoping that something sports related can be a career for her in the future.

My DS is 9 and has HFA, he was dx when he was about 6. His speech when was younger until he was about 4 was delayed. So he is still to this day under a speech therapist but it's now to work on the social side. Under a speech therapist formally when turned 2 but unoffically when he was a baby and i had to take him along to his sisters doctor etc meetings. All the speech therapists and the doctors in the room had one ear on the meeting and one ear on him babbling.

He's also been dx with ADHD, developmental co ordination disorder and oppositional defiance disorder.

The fantastic school that my 14 year old went to??? Unfortunately went down hill shortly before my son started there as the deputy retired and the head couldn't cope without her (worked as a team for over 20 yrs) Ofsted came in 2 terms after she left and the school got 4's. He ?retired.

Have just recently removed my son from that school and have put him in another school for the last half of last term. So very early days but my husband and I are feeling positive. The children were a lot more tolerant of him. They soon figured out his triggers and they seem to be able to defuse him a lot quicker then the old school. They also said that they will give him a choice if he doesn't want to write (although he done more writing in that half term then he has done in a yr at the old school). He can type, have someone scribe for him or use a dictaphone.

fabergeegg Wed 07-Aug-13 00:27:43

Thanks. A bit too shell-shocked to reply but have been devouring these posts and reading them aloud to slightly bewildered DH (who says he's got Asperger's and managed fine).

lisad123everybodydancenow Wed 07-Aug-13 00:37:23

Message withdrawn at poster's request.

Eyesunderarock Wed 07-Aug-13 00:39:53

Your OH has a diagnosis of Asperger's?
Is he friendless and unhappy?

colettemum3 Wed 07-Aug-13 01:06:17

Your going to be shell shocked for a few days with the what ifs!!
When your feeling 70% back to norm make an appointment with the GP.
You will need a referral to a paed. Also try and get referred to a speech therapist or find out the age she has to be when that can happen if she's too young. Another one i forgot to mention but another poster has and that is to ask for a hearing assessment.

Don't be fobbed off by well dooers who say 'oh my child didn't speak when he was 5'. That's their child, that's not your daughter and honestly the sooner she gets seen the better. Early intervention is the key.

If you have a drop in children centre or sure start near you? See if they have a speech therapist who does sessions.
My son went to a children centre/nursery when he was 2. It was part private part referral. For me to get him referred it was via the social services. My son spent 5 minutes in 'their' room and he was on the waiting list. (HEHEHEHEHE)
He went there 3 days a week from 10 to 3pm. They had staffing problems at the time in getting a speech therapist but it was still socialization with other children.

Most importantly, please don't treat your daughter differently as children can sense things and if your really tearful around her she's going to know and it's going to worry her. She could become more withdrawn or she may act out. So both you and your husband have got to be who you were before the bomb shell.

So if your going to do some therapy with her at home introduce it slowly. Like start with one sign and don't give up as it may take weeks.

colettemum3 Wed 07-Aug-13 01:22:49

I just want to clarify something. My bugbear with your homestart person was that she said Aspergers. If she had said Autism or ASD then i would of been fine with it.

If you C and P my link or just googled the term 'differences between aspergers and high functioning autism' then you understand why.

I just think it was dangerous of her to have said Aspergers to you. Because what if you pinned your hopes on DD being dx with Aspergers and you get told something else?
Something lower down in the spectrum?

Allalonenow Wed 07-Aug-13 01:44:35

I'm not qualified in any way, but I think the person who offered the diagnosis is being very simplistic and unprofessional.

My Grandson has been diagnosed as on the spectrum, but this took many difficult years of heartbreaking problems for their lovely family.

My beautiful Grandson is a teenager now, and is loving and gentle, with a complex code of behavior tempered with an amazing memory and a wonderful sense of fun.

Please please do not go down the "blame" path, your daughter is who she is, enjoy her for who she is, and the gifts that she brings you.

I hope you find comfort in all the very positive posts here.

ThatVikRinA22 Wed 07-Aug-13 02:11:51

my son was diagnosed at 7, but i knew there was something from him being 4 and starting nursery.

while it was not the homestart volunteers place to say anything i have to say that i can spot people on the spectrum very easily - it comes from living with ds though....(and i know i have traits - dh says i am "touched" with aspieness....as are most of my family)

so.
positives. DS is 21. He found school difficult, but made a few solid friendships in his later teens.He excelled in maths and sciences. He did very well in his GCSEs. He went to college and did A levels. He went on to do a foundation degree in computer information systems and then went on to uni in his 3rd year to complete his degree.
he managed ok with living independently.
he did not complete his degree (he did not cope with the stress and self management well) BUT he got 2 job offers within a week of leaving. He has just moved 400 miles away and is holding down his job as an IT systems andministator for a small firm. He is enjoying the job. He is very skilled in his field.
He is living in a shared house and is still alive which i take to be a good sign grin it means he is eating ok, DH has been to see his place and says it is in a good area (which DS chose himself) and while not particularly clean or tidy he is ok....

we have had some glitches along the way - he operates at probably 3/4 of his actual age - but he is managing and calls me if he has any issues which i then sort out for him, or help him sort them for himself.

life with aspies is interesting. not less. sometimes it hasnt been easy, but he has a good heart, is usually kind, and can be reasoned with. He is super talented at his job, and taught himself to programme computers when he was just 11.
they are equally amazing and infuriating. but lovable. and capable of loving back.
and the thing with AS or any ASD is that it is developmental - which means they can and do learn. it may just take a bit longer than NT kids.

DS has an amazingly kind streak. He has done some amazing things for others, without stopping to take credit (credit means nothing to him) so he is very humble at times, and he is the most resilient person i have ever known. he bounces back from everything.

dont be scared. just mention these concerns to your HV or a trusted gp.
my ds was diagnosed a long time ago where the trend was to keep things like this hushed up and not "label" children - in my experience the label has helped enormously for DS.
He understands himself because of it. He does not feel a lesser person, and if he makes a social gaffe, then he can, if he chooses to, explain why.

Asperger's is no longer diagnosed but not all health professionals will be aware of the change as it is fairly recent here

FanjoForTheMammaries Wed 07-Aug-13 07:28:14

Talking about pinning your hopes on Aspergers and it being a "blow" to get a DX of lower down the spectrum isn't ideal colettemum.

FanjoForTheMammaries Wed 07-Aug-13 07:29:18

My DD has autism and isn't HF and is incredibly happy.

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