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

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.


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.

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).

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

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 are most of my family)

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.

QualityScout Wed 07-Aug-13 08:09:45

I'd cut the lady some slack. Honestly, if your daughter does have asd the earlier intervention starts then the better the outcome. If she doesn't then she'll just have had some fun play sessions - no drawback there as far as i can see.

No they're not supposed to diagnose but she wasn't doing that - you put her on the spot and she responded with honesty and told you it needed investigation. Don't shoot the messenger.

Don't blame yourself (easier said than done i know). And don't be downhearted (ditto). As people say, she's still your daughter. But equally ignore those who say she's fine - they just want the "problem" to go away - unlike that lady they don't have your daughter's best interests at heart.

colettemum3 Wed 07-Aug-13 08:35:53

FanjoForTheMammaries..... How else was i supposed to put it? I had the sneaky suspicion that Aspergers wasn't dx any more but wasn't 100 % sure so didn't mention it.

Like iv'e already mention, iv'e got 2 on the spectrum. My 15dd is lower in the spectrum then my son. Yes she may be taking GCSE's but honestly she hasn't got any common sense at all for example putting boiling water in a plastic pint glass or emptying water out on to the kitchen floor instead of the sink.

My HFA son is a lying little toe rag. For example we have a couple of 'crates' of gatorade for the 15yr old for when she does sports. DS got caught with a bottle and was told that he can only have a bottle when he does boxing. Less then 2 hours later he gets caught drinking another bottle. Or for example that night he was supposed to be in the bath and we hear ask 'can i get out now?' for my husband to walk past his bedroom and see him playing with the lego.

I wasn't happy at the time but now writing this iv'e got a smirk on my face and doing my best not to laugh my head off.

All 3 of them are at times are very happy and at other times they get upset. I don't know what a NT family is like. To me my 3 children are NT.
The poster, if her child does have difficulties is going to grieve for the child that wasn't. She's going to have days of 'what if's'. Have days when she'll be cursing and effing at the medical and educational professionals.

But then her precious daughter will then either smile at her or does something that she hasn't managed to do before and then the poster will be so overcome with joy and love for her child that the what if's will come lesser and less.

FanjoForTheMammaries Wed 07-Aug-13 08:37:27

You are right.

But its not right to talk of AS as a more desirable DX IMO.

NeoMaxiZoomDweebie Wed 07-Aug-13 08:49:59

OP ASKED the HSW if there was any chance of ASD and she said she had suspected it too...she wasn't going about diagnosing things! People are SO fast to try to quash a Mother's fears on here which quite oten come rom instinct and should be ollowed up.

OP....I know the fear of which you speak as my older DD also had some red flags for Autism. She's 9 now and very sociable and happy. As a 2, 3, 4 and 5 year old however she was "odd" and very anti-social. She's bright...some bright kids are a bit borderline with ASD and though my DD doesn't fit the mould enough to get a diagnosis, she's got some characteristics still. But she has loads of friends....don't worry, your DD wil be who she is and she has a good Mother who cares. She'll be fine!

colettemum3 Wed 07-Aug-13 08:52:07

That wasn't what i was going for. It's just that the majority of other posters were talking about Aspergers and HFA and their success stories. I was just trying to say that it's a huge spectrum and at the end of the day it doesn't matter if your child is on the higher or the lower they will still be the same child that they were before the dx. I was just worried that the poster and her husband would google everything about Aspergers and get told something different might crush them. I was just trying to have her be open minded, get her daughter assessed and to cross the dx bridge when it comes to it.

At the moment my 15dd is busy listening to pokemon on her mobile :D Is the first one dressed and waiting to go out. Whilst i can guarantee my 14dd isn't and will take about 40 minutes to find clothes. My son has already tried to pull a fast one on me this morning.

So i better go and get myself ready and take them to their clubs. (which my 14dd has already tried to get out of)

So have a good day everyone

Scruffey Wed 07-Aug-13 09:01:19

Your child is your child - any diagnosis will not change the little girl sitting in front of you so always remember that. My DS has mild aspergers and with adjustments, he is happy and fine and fits in at school. In any case, your dd is v young for a definitive diagnosis and additionally the person suggesting it was completely unqualified. Try not to worry.

NeoMaxiZoomDweebie Wed 07-Aug-13 09:10:19

Scruffey is so right. My friend's son has just be dxd and she's very philisophical about it all and says "He's still X and has always been X. Words on a page won't change his potential."

chateauferret Thu 08-Aug-13 01:56:24

Home start merely thought it was a possibility when it was mentioned by OP and said she wasn't a doctor.

Hands up everyone who thinks that discussion falls within the definition of 'diagnosis'.

justaboutreadyforbed Thu 08-Aug-13 03:02:18

I'm irritated by the number of people who think 2 is too early. The M-CHAT is designed to be done at 18 months, you should be able to see signs of atypical development (possibly autism, possibly not) as a result of that at that age.
It is irresponsible fucking nonsense to say that it's too early to worry, because if it is is autism/Aspergers then you need help asap, the therapies need to start young to have the most effect.

I agree justabout. My son was dxed just after his third birthday although was in the system from 2 (and we all knew it was autism- the dx took 6 weeks). He would have been dxed earlier but we had a 6 month wait for assessment. He was affectionate, friendly & still able to be dxed accurately. if there is a problem it can be recognised & support given from an early age.

Just to add - the key for me isn't what support workers etc say - it's whether the mother has concerns (the reality is fathers usually don't). If she has concerns (& the OP had enough concerns to ask someone her opinion / the information wasn't volunteered) then IMO it is always wise to follow that up. The reality is it's hard to rest anyway without getting further checks. Btdtgtts

cushtie335 Thu 08-Aug-13 12:48:43

"playdates" at 2 years of age are utterly pointless. As others have said, they play alongside each other if you're lucky, other than that they will probably totally ignore each other. Most dcs don't learn empathy or play skills until around the age of 4. You're putting FAR too much pressure on yourself and your dd if you think she should be interacting with her peers at this age. I've no idea if she's on the autistic spectrum or not, but the homestart worker had no right to put the wind up you like this.

My son was diagnosed with ASD at 2 yrs 3 months: I was concerned by 18 months, posted on mumsnet special needs chat, did the Modified Checklist for Autism in Toddlers (mchat) - went to GP who did it again (at 20 months) - he's now getting great help and the earlier the better - the early years are crucial and early intervention has better positive outcomes.

Don't be put off by well meaning people saying she may grow out of it: she may or she may not but get expert help early, don't leave it.

DS is too little to have Aspergers diagnosis and in any case it's been dropped as a diagnosis but I am grateful every day that I followed up early with my jolly, bright, chatty son aged nearly 3. Trust your instinct and be proactive. And check out SN boards for fab advice.

fabergeegg Fri 09-Aug-13 14:41:52

Thank you everyone. I appreciate all comments. It's very, very comforting to think that others have experienced frightening times with children who have gone on to thrive regardless of any diagnosis.

Support worker was with us again today and stressed it was too early to know anything. She also said DD is great with eye contact and engagement when she feels like it, also that she's very different when she's relaxed. Other children make her anxious, so it's difficult to get past the shyness and see what you have. Hard to know if this is comforting or not!

The mchat test suggested a score of 2/3 so slightly heightened risk. We're going to do as much as we have to regarding early intervention but try to leave the worrying/diagnosing malarkey until more time has passed. Once the Health Visitor has seen her, it will be up to her to refer on as she thinks right. I'd appreciate thoughts on how normal it is to get a few words, then stop bothering using them? My DD seems to try a word for as long as she's interested in what it means, then give up on it. So looking at the word list she had a couple of months ago, it's considerably shorter now - yet her comprehension is greater.

Playdates certainly do seem pointless and I don't have great expectations for DD. It's more that there seemed to be a pretty wide gap between DD and the few children we have spent much time with.

And another mother who I'm never hanging out with again told me that her husband thought my DD might have Asperger's. Nothing against the diagnosis, everything against this conversation going on about my DD and then being reported back angry I suppose this kind of insensitivity is what many have to deal with on a daily basis...what a learning curve!

Thanks again.

Amiee Fri 09-Aug-13 15:01:48

Lots of children show ASD behaviours this is one of the reason diagnosis is so hard.
I'm not saying dismiss what's she's said but take it with a bucket of salt. I work with children that are ASD, children who have all sorts of disorders and delays as well as typically developing kids. If you gave a diagnosis to every child that gives you a 'that's a bit ASD' thought they'd almost all have one (and my own and most of my friends kids).
If your worried ask for a referral to check her hearing and
ask for a referral to SALT if your worried about her language.
By the way, I have known wonderful engaging social children who are on the spectrum and antisocial grumpy difficult children who aren't. Just like with any child her temperament and personality is going to be a journey of discovery through out her life.

PolterGoose Fri 09-Aug-13 16:58:02

Agree with the posters saying earlier the better if you have concerns. I knew ds was on the autism spectrum from probably before 2 but kept getting fobbed off and he eventually got diagnosed at 6.

I wish any professional involved with us in those early years had suggested ASD instead of it just being me and my suspicions, those were tough years.

And, Aspergers hasn't gone, it no longer exists in the DSM, but the ICD, which is mostly used in the UK, has yet to remove it as a diagnosis.

justaboutreadyforbed Fri 09-Aug-13 20:23:23

I think those language behaviours are a red flag, a child who is losing words should definitely be referred asap.

Sorry to be so blunt but it is a huge warning sign, if it is a pattern of losing words that is. SALT would be the best bet I think because they can tell whether it falls into the normal range language-wise or not. Please don't delay and ask your HV for a speech therapy referral anyway, whether she has social concerns about your dd or not.

See I wouldn't be concerned about the words thing at this age because of what I've seen with dd1. Her speech was very restricted at this age. She did a lot of trying a word and then not saying it again. She would communicate by noise not word. I know the HV was bemused at the 18 month check because she wouldn't point to her nose. I managed to display her level of comprehension by getting her to point to her boots. Aged 2 1/2 I know she rarely put two words together (because I remember a famous family occasion when she hurled a small wooden horse from her and said 'stupid horse'.) Aged 2 3/4 her sister was born and the day after she stood up in her cot and said 'Go find baby'. I remember that because I'd spent the previous night fretting that she would hate the baby! That shows though the very simple sentence structure she was still using. I can't remember exactly what age she 'caught' up but she certainly did. She is now a very articulate 15, on the gifted and talented register and with a facility for learning languages.

Children are complicated and exhibiting certain behaviours DO NOT add up to a diagnosis. That's just how that child is.

fabergeegg Fri 09-Aug-13 22:51:12

'stupid horse'

Perhaps my DD is so used to having every whim catered for that she doesn't see any need to talk...

justaboutreadyforbed Sat 10-Aug-13 00:12:02

OFG northernlurker. Ask any SALT or paediatrician. A child who is losing words is exhibiting signs of a possible autistic regression, which needs urgent investigation. Get that child seen by someone qualified to judge.

sorry to be blunt, OP

FanjoForTheMammaries Sat 10-Aug-13 09:49:47

Agreed. .when my DD lost words the paediatrician was extremely concerned.

The OP's child is very young. It takes time to see exactly what's going on and as I made clear, I have seen behaviour such as she describes, exactly in fact, in my own family at this sort of age with no lasting issues. Or perhaps you'd like to tell me my child is autistic and I haven't noticed? hmm
The OP asked 'I'd appreciate thoughts on how normal it is to get a few words, then stop bothering using them? My DD seems to try a word for as long as she's interested in what it means, then give up on it. So looking at the word list she had a couple of months ago, it's considerably shorter now - yet her comprehension is greater' - that's a good summary of what I wrote in dd's birth to 5 book 13 years ago.

The mchat test can be administered at 18 months.
It does not 'take time to see'; a trained developmental professional can see signs early and avoid more time being wasted. The 'wait and see DC still v young' approach is not helpful. It wastes crucial time and when they are still very young is when early intervention is most effective.

Losing words IS a red flag.
If investigation shows there is nothing to be concerned about, great.
But don't listen to all the 'wait and see' voices however well-meaning if you have concerns.

googlyeyes Sat 10-Aug-13 17:00:38

The danger of posting on the main boards is that countless people will tell you not to worry and that two is too young.

It really isn't.

My son's social and communication difficulties were flagged at 15ms and he was diagnosed with autism at 23 months.

This isn't to say that anything is wrong in your ds's case. Just that there are certain red flags that can be apparent long before the age of 2

googlyeyes Sat 10-Aug-13 17:01:20

Dd, sorry

I'm really uncomfortable with this whole 'red flag' thing tbh. Certain behaviour may or may not be significant. It's surely as useful to hear about that behaviour in a context where the issue resolved as in any other? The OP is seeing her HV about this issue - so professional involvement is in place. I just don't think it's helpful to define (as some posters seem to want to do) certain characteristics as indisputably sinister - because that IS what you imply when you describe something as a 'red flag'.

FanjoForTheMammaries Sat 10-Aug-13 18:10:59

Well if it is not sinister then no harm in getting checked out surely ?

FanjoForTheMammaries Sat 10-Aug-13 18:12:27

People are just concerned that if it was anything significant but the OP was reassured and just waited, she could miss out on the chance of early intervention which is most successful.

Of course noone can diagnose anything on here

FanjoForTheMammaries Sat 10-Aug-13 18:24:43

And HVs are not qualified to assess such things, so we are suggesting referral to paediatrician.

The HV is on the route to referral. I know they (sometimes rightly) get a terrible press on here but all are qualified HCPs with a particular responsibility for child development. It's the appropriate first step for concerns such as the OP's.

FanjoForTheMammaries Sat 10-Aug-13 19:21:50

I far more often hear of HVs saying all is well even if it isn't and not referring on than I hear of them referring on so that's probably why I personally would advise asking for referral to paediatrician.

FanjoForTheMammaries Sat 10-Aug-13 19:22:51

I am not automatically anti HV of my best friends is one smile

Two is young, but as some have said not too young to begin the diagnosis process. It could be that something other than ASD could be flagged up, in which case you'll be getting some valuable advice in how to deal with them.

It could be that she's just going through a developmentally normal 'phase'.

If she does flag up as having ASD or something else, you'll be getting help you need early and it may help a lot with later life.

There's a lot of high functioning autism (both diagnosed and non-diagnosed) in my family. My two sons are (diagnosed) Aspie/HFA. Both have friends, enjoy different activities, do very well at school and will probably have a good life. They love me and show me in lots of ways, and they have a brilliant imagination and a (geeky) sense of humour. Do they have problems? Most definitely! But life is not without problems, and they face them courageously and we find a way to get through and learn.

My cousin (almost definitely an aspie) didn't talk until he was four, and his first words were when he asked what a phrase on a label meant (having taught himself to read). Turns out he just didn't see the point in talking until that point. Fast forward to now, and he has a first class degree from a Russell group uni, a lovely girlfriend, and a job he loves. He has something around 400 (!) friends on Facebook. No, I don't think they're all bosom buddies - but he talks to people and they do like him, with all his quirkiness (maybe - dare I say it - because of it!).

My Dad recognises a lot of himself in them, as does my DH, and if I'm honest, so do I, and we've all had good lives.

I would urge you to be cautious though, because you don't actually have a diagnosis, and tbh a lot of the symptoms you've described could have a number of different causes.

OxfordBags Sat 10-Aug-13 19:26:14

Your Dd sounds shy (which you know the reason for - I am a disabled mum too, and my Ds is shy which I think is because we haven't mixed quite as much as we might have), doesn't want to obey (I'm in my 40s and I don't want to obey anyone!), hasn't got loads of words and doesn't say please or thank you.

Well, she sounds like a lovely, normal little toddler - and I mean normal whether that's ASD, Neurotypical or anywhere inbetween. I don't know a single kid of that age who was saying please and thank you, btw. My Ds says it at nearly 2.5 but he doesn't really understand it, he just thinks it's something you tag onto the end of what you're saying.

I have two family members and a friend with Asperger' is my younger brother, and you could not have been able to tell at nearly 2, no way. In fact, he's always been annoying extroverted, not shy. Lots of people nowadays are so quick to ignorantly label shyness or not wanting to socialise as Aserger's, when surely there are times when everyone feels shy and doesn't want to be with lots of others. The only difference is, adults and older children get to express if they don't want to mingle, whereas we just plonk tots in with other tots and expect them to enjoy it every time.

FanjoForTheMammaries Sat 10-Aug-13 20:10:00

The lack of interaction and not wanting to obey of autism are entirely different to shyness.

It is not possible to diagnose either from a description on here.

I could write about my DD and people would say she was just shy.. she isn't.

That's why people are suggesting a referral..just so any problems
which may or may not exist can be picked up and addressed. Not because they are diagnosing online.

FanjoForTheMammaries Sat 10-Aug-13 20:11:10

Incidentally, my DD has quite severe autism but would love to mingle with others now, she just doesn't know how to.

Autism and shyness are totally unrelated.

Fabsmum Sat 10-Aug-13 22:23:43

Ds was diagnosed with Aspergers at 7 by CAMHS.

But I knew he was on the spectrum at 3. His behaviour and interaction with other children was just so... unusual. He is inflexible and extremely focused. His attention is like a fast flowing stream that will only go in the direction he wills it to.

I'm SO proud of him. He makes me very happy every day and pushes me to the edge of reason, and beyond but I won't go into that here

justaboutreadyforbed Sun 11-Aug-13 00:11:57

My two with ASD are very very very sociable.
My one with no diagnosis is the shy one.

You can be shy, or not shy, with Asd or without it, surely?
Shyness/introversion is a personality thing and ASD is a pervasive developmental disorder which can be identified by certain red flags when proper tests are conducted by trained professionals qualified to make a diagnosis.

Which is why people have suggested the little girl is seen by a paediatrician specialising in development, or similarly qualified clinical psychologist.

Because we can't say from reading a post, and even a skilled child care worker can't say, nor a parent - but it is always worth following up concerns because if the DD is on the spectrum or has particular needs, the time to act is now, given the plasticity of the developing brain in the early pre school / toddler years - and this is supported by solid evidence.

Just leaving it and waiting can mean missing a golden window to help a child. And if there's nothing to worry about then peace of mind is valuable too. There really is nothing to lose and much to gain from getting professional advice.

Sparklysilversequins Sun 11-Aug-13 02:28:38

I have two dc with ASD. A boy and a girl.

ASD is very different in girls than boys so I will tell you what I noticed about dd.

Speech delay, no spontaneous or conversational speech by age two and a half.
Didn't play imaginatively with toys, she liked and still likes what she called "collections", grouping toys or just things she liked together e.g shoes, a tea towel etc on the floor or lining them up on her play kitchen. She would lay play food out on plates or her bears but thre was no sense of her "playing a game" iyswim?
Horrific tantrums.
Playing quietly and peacefully in the same room as her dbro but rarely communicating.
VERY clingy to me, no relationships with anyone else, even her Dad and grandparents, that's improved no end now though.

Don't be frightened, it feels scary but in the end it really, really isn't. I promise smile. Stick around on MN loads of parents with dc with ASD on here and it really helped me to accept knowing I wasn't alone.

That said I am in agreement that its pretty young for the things you describe to be put down to ASD and I think your HV has approached this really badly and unprofessionally, even if she has concerns she should not have raised them like this.

PeriodFeatures Sun 11-Aug-13 04:16:56

Aspergers has been taken out of the DSM this year so she will not get a diagnosis!

Really your HomeStart worker ought not have said that to you. Your DD is 2. She sounds like a wilful 2 year old to me!

What i'd suggest, if you are still querying this, is contacting your local sure start and finding out if there are any parent and toddler groups for families with children with ASD in your area. There are often voluntary organisations that run these and you don't usually have to have a formal diagnosis to go along. Go along and see how you feel/whether it seems to fit, talk to other parents if you feel comfortable. You can also request an assessment by paediatrician. This can take a few years to complete.

I want to say, don't worry at the moment but you are her parent and know her best. I have known plenty of young people with high functioning ASD do really really well and learn to find strategies to cope socially, go on and achieve all sorts of things.

Levantine Sun 11-Aug-13 06:33:04

Period, as perverts being taken out of DSM just means that the diagnosis would be autism not aspergers, not that OP's dd wouldn't get a diagnosis if appropriate.

OP if you, in your gut think there is something to this then I would ask GP for a referral to a developmental paediatrician. It takes ages to go through the diagnostic process (9 months for us from GP to dx), so you will be able to go at your own pace in thinking about this all.

PeriodFeatures Sun 11-Aug-13 07:33:17

Yes true Levantine. I just know that our local Paediatricians are not diagnosing aspergers anymore and High Functioning ASD is diagnosed instead. Sorry, that wasn't clear posting.

Levantine Sun 11-Aug-13 07:35:19

I thought so!

PolterGoose Sun 11-Aug-13 08:17:26

PeriodFeatures as has been said already, the UK uses the ICD, which still includes Aspergers. HFA does not exist in the latest DSM.

PeriodFeatures Sun 11-Aug-13 08:22:41

Polter our local paediatricians (or at least two i know of) are not diagnosing Aspergers anymore due to this. I know high functioning Autism in medical terms is just 'autism'... sorry, again unclear! The spectrum is usually explained as far as i'm aware. It has been quite distressing for some parents who have expected an Aspergers Diagnosis and started assessments some time ago. I guess it depends a lot on the Peadiatrician.

I will have a look into this. Thank you.

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