Aspergers/ASD support thread

bobbins7

Its not easy for your sister and often families can be placed under immense strain, on relationships and effects on other siblings too.

Your sister needs strength first and foremost to enable her to give her best to your nephew. She is depressed by the sound of things. She is entitled to an assessment in her own right as a carer so contact social services and push for this this could link her into services and financial support advice. Also you need to check she has access to effective support groups.

The Contact a Family directory deals with children with all known
disabilities ( ref web search engine / library.) It offers support groups and information and can put you in direct contact with other families to share advice etc. Worth pursuing. its good to have communication with someone who is going thru the same thing .
You may also find that your local area operates a Share the Care Scheme ( rEF :- Shared Care uk VIA search engine )whereby children with disabilities can stay with another approved and assessed family. This provides families with a break from caring anda chance to recharge batteries but MORE IMPORTANTLY it would offer your nephew a chance to spend time with others.
Kids with disabilities dont always have the same opportunities as their siblings to spend days out or a night sleep over. I know this can be difficult for children with types of autism but its not impossible if introductions done slowly and sensitively.

Your sister must push for a statement and pester the school to ensure that your nephew's needs are being met.

Is he in mainstream school? Sometimes teachers are not always equipt to deal with diabilities and although normalisation isnt a bad thing your nephew needs a caring school who inderstand his special needs.

Your sister may also entitled to Direct Payments- a sum of money ( again usually arranged via social services) to provide for your nephew's care needs. This can be used however you want it to be e.g on outings, someone to babysit, play games with your nephew or whatever!
Good Luck it sounds like a caring sis like you will go a great way to helping your sis and lovely nephew out.

notakid

My son is ASD he is not clever enough to be dianozed with Asperger's but he is very similar just not brilliant! I had no help at all in his junior school. He was very well behaved so they could just ignore him really. The other children would take the mickey out of him because he is really good natured but will ask very strange questions. i was really worried when he went to Secondary School as he wanted to go the local school which is a maths college and had a very bad rep on Special Needs. However a new SENCo had started and bonded really well with Andrew and she got him statemented in his second year. The teachers are all aware of Andrew and very supportive. There are two other boys in his year with Aspergers one is statemented the other not, but again the SENCo and the teachers are aware and look out for them as much as they are able. Its hard trying to help children with ASd be social, my son would love friends but i have watched him when he has children over and he asks questions continually! I just hope the teenage years won't be too hard on him but he knows he is different and its really sad to see him struggle. I wouldn't swap him for the world he is handsome kind and really truthful! I don't think he would lie, cheat, or try and hurt somebody. I think the mother of the magnificent seven said something similar.

Dummie_2

Hello

DS is 23mths. He is extremely quiet. Half the time you wouldn't know he was there. He's not talking yet either. He has said a few words like mummy, daddy, yoghurt, orange but he only says these words maybe once every few weeks. He goes to nursery as I was worried about how quiet he was and he's been attending for 5mths now. He doesn't mix with the other kids. Basically his time spent there is like his time spent at home. He just plays with his toys by himself and ignores everyone else. When there are group activities he doesn't join in and just prefers to play by himself elsewhere.

I have been concerned about him but mostly put it down to him being naturally quiet but now I've been reading up on Autism and I'm scared.

I read on a website that the characteristics of Autism are:

Social interaction (difficulty with social relationships, for example appearing aloof and indifferent to other people) He is like this at nursery and with most people but not everyone. For example he's not alooft with us or with our brother-in-law.

Social communication (difficulty with verbal and non-verbal communication, for example not fully understanding the meaning of common gestures, facial expressions or tone of voice) Verbal communication I've covered above. With non-verbal he will come and grab my hand and lead me to the TV if he wants to watch TV.


Imagination (difficulty in the development of interpersonal play and imagination, for example having a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively). Not really sure how to judge this one

I'm beginning to freak out. Does anyone here have experience in dealing with Autism who can offer some advice or thoughts pls.

fsdss

firstly dont worry - you can read up on anything and the end outcome is always worse

when i read it i thought your child could be displaying signs of a hearing impairement (glue ear / prolonged infection) but then i'm only guessing.

what i suggest that you do is ring your HV and ask her for a 2 year assessment, tell her that you're worried. your HV can refer for hearing / speech therapy or gp/ peadiatrician referral

hobo28

My little brother is autistic. There are varying degrees.

Does your son socialise with you? For example, does he love cuddles, does he make eye contact? Does he play games occasionally with you? If he does this then you should be ok.

My little brother is nearly 15 now. He's incredibly bright but just stuck in his own world.

Nicki

My daughter is profoundly autistic and was diagnosed when she was the same age as your son. Autistic children, like any other children, are all different, and they will all have different symptoms. What will be the same, however, is that they all interact socially in an unusual way. Using eye contact as an example as it was raised by hobo28, some may give no eye contact at all, others will give fleeting eye contact, others will stare fixedly, and yet others will have absolutely normal eye contact, but difficulties in other areas.

Autism is very hard to diagnose, and usually the child needs to be observed over a fairly extended period to make the diagnosis, as we all do things which could fit the stereotypes from time to time. When my DD was diagnosed she spent two half days with a multi-disciplinary team, plus a separate session with a SLT, at the end of which the diagnosis was made.

Early intervention is very important, so if you have concerns you should get the ball rolling now. The first person to approach should be your HV, and if you get no joy there go to your GP. Try to get down on paper all of your concerns so that you are putting together a coherent case for a referral. Key things to look for (and the list is not exhaustive, nor is it diagnostic) are:
1. does your child respond to his name
2. does he seem to understand what you say to him
3. can he engage in a game or share a book with you, or do any other kind of shared activity
4. is he rigid about routines - do you always have to follow the same route to key activities or do things in the same order
5. is his eye contact unusual
6. does he line things up, or play with his toys in an unusual way (eg spins the wheels of his toy cars, rather than push them around)
7. does he point
8. does he walk on tip toe a lot
9. does he have unusual sensitivities to light, noise or touch
10 does he have behavioural issues which seem to you to be more than the usual "terrible twos"
11 is he unusually passive
12 is he affected by other people's emotions - would he react if you burst into tears or laugh if you laughed
13 does he have any obsessions
14 does he have an unusually high or low pain threshold
15 does he seem to be in a world of his own - hard to describe but you would know it when you see it. When she was smaller, my DD was often physically in the room with us, but mentally she could have been on another planet.

There is a good forum at https://www.asd-forum.co.uk where you are likely to find lots of support, while you work through all of this. Alternatively feel free to PM me if you would like any more info.

lil_me

Nicki is right, very good forum, one thing is don't worry, Autism isn't that scary most of the time even if he is diagnosed (I have one son on spectrum and another currently being assessed at the minute with suspected ASD) There are things that can be done to help your little guy, but also as Nicki said early intervention is very important. As Nicki has said the diagnostic process can be a long one, took 32 hours of assessments and of course the ruling out fragile x blood tests before a diagnois was made with my oldest.

Best thing to do is voice your concerns with GP/Health Visitor and ask Nursery to do a brief report for you if possible to take with you, then you won't feel like a neurotic mother when you speak to them (which a lot of parents comment on)

Also here if you need any help

Dummie_2

fsdss wrote:

when i read it i thought your child could be displaying signs of a hearing impairement (glue ear / prolonged infection) but then i'm only guessing.

His hearing seems to be fine. He will turn his head when he hears a noise and his fave toys are the ones that play music.

hobo28 wrote:

Does your son socialise with you? For example, does he love cuddles, does he make eye contact? Does he play games occasionally with you? If he does this then you should be ok.

Yes, my son socialises with me. I am able to give him cuddles but it's very rare that he'll come to me for cuddles. I am able to successfully ask for a cuddle on some occasions. There is eye contact sometimes mostly at night when I'm giving him his milk as I sing to him and he tends to enjoy that. Playing games together is quite rare. The past few days I've tried to be more engaging and entertaining and it does seem to be working as he's remembered the game I played with him and will non verbally request we play the game every now and again.

Nicki wrote:

1. does your child respond to his name
2. does he seem to understand what you say to him
3. can he engage in a game or share a book with you, or do any other kind of shared activity
4. is he rigid about routines - do you always have to follow the same route to key activities or do things in the same order
5. is his eye contact unusual
6. does he line things up, or play with his toys in an unusual way (eg spins the wheels of his toy cars, rather than push them around)
7. does he point
8. does he walk on tip toe a lot
9. does he have unusual sensitivities to light, noise or touch
10 does he have behavioural issues which seem to you to be more than the usual "terrible twos"
11 is he unusually passive
12 is he affected by other people's emotions - would he react if you burst into tears or laugh if you laughed
13 does he have any obsessions
14 does he have an unusually high or low pain threshold
15 does he seem to be in a world of his own - hard to describe but you would know it when you see it. When she was smaller, my DD was often physically in the room with us, but mentally she could have been on another planet.

1) He does on rare occasions but usually he doesn't acknowledge that we're calling him
2)This is getting better. He'll understand simple things like TV and go upstairs
3)He loves sharing books together
4)No
5)During the day there is usually limited eye contact. He maintains eye contact longest at night as mentioned above
6)This ones hard to judge. One thing is he will keep pressing the same button repeatedly. He can sit and play with the same toy for 30-45mins just pressing the same button. This is usually a music toy of some kind. Even if he gets up and walks away, as soon as the music has stopped he go back, press the button and then walk away again.
7)No
8)He's started doing it a few weeks back but not all the time
9)Not that I've noticed
10)No. He's very placid and laid back. When he was a baby he hardly cried. Only when he was over tired. He cries a lot more now as we're going through the terrible 2's (mostly when he can't get or do what he wants)
11)Yes I would say so
12)When he was younger yes but not now
13)Would pressing the same button on a toy repeatedly for 1/2hr count?
14)Not that I've noticed
15)Yes I think so. Like you said we can be in the same room but not notice he's there. He'll do his own thing and ignore everything else. Sometimes, when he wants something (like wanting the TV to be switched on) he come up to me, grab hold of my hand and lead me to whatever he wants so it's like he can be in a world of his own but will also come out of it?

lil_me wrote:

Best thing to do is voice your concerns with GP/Health Visitor and ask Nursery to do a brief report for you if possible to take with you, then you won't feel like a neurotic mother when you speak to them (which a lot of parents comment on)QUOTE]

Actually, on Monday when I went to pick DS up from nursery, I asked his key worker if he was mixing with the other children or joining in with their group activities now after being there for 5mths. She said no and that 'X' had come and observed him a a few hours and reckoned it was just the way he is. At the time I didn't ask who 'X' was and why they had requested this person observe my son. He's going to nursery again today so I'll ask.

Do you think I should bring up my concerns with his key worker?

Anyway, it's a long long post so thanks to everyone's who's had the patience to read through it. Thanks to everyone for your advice, kind words and support. It really is appreciated and needed. <<<HUGS>>>

hobo28

Hi Dummie

I would definitely bring your concerns up with your key worker. Thats what she is there for. I don't think any of us on this forum are health professionals.

Its impossible for us to tell for certain but I would say I find some similarities between my brother and your son. For example, repeatedly pressing the same button is similar to what my brother does. He often when watching TV will rewind the same clip over and over again. He's worn out several video recorders doing this!

Also the limited eye contact and being in his own world is also like my bro. I would definitely get a medical opinion from a specialist. Even if its only that they tell you your being daft. At least you know!

Dummie_2

Just come back from dropping DS off at nursery. His keyworker wasn't there. She must be on the late shift so I'll get to talk to her when I pick him up.

When we dropped him off, he climbed up onto the slide. He then stood on the platform staring in the direction of some children playing with lego. The carer there was calling his name and asking him asking him if he wanted to go over and play with them. He completely ignored her. Didn't acknowledge her whatsoever. Just blankly stared. I nearly cried. Because this has been playing on my mind the past few days I've become so sensitive to his behaviour. Usually I would just put it down to him being reserved and choosing to ignore people. Is this possible? Can toddlers this age actually choose to ignore and not acknowledge people when they talk to them?