Aspergers/ASD support thread

Mrs_Optimist

Your HV should be hung drawn and quartered. You are his mum and listen to your gut instinct. I want to echo what a lot of people have already said, YOU know YOUR SON, better than ANYONE ELSE, and if you are concerned, they should be taking your concerns seriously. I very much doubt the HV will give you a different attitude when she asesses your son in 2 weeks. Can you see your GP? I would have thought that they had more power in terms of referalls than a HV. You are doing a great job and as long as your son has his mum fighting his corner he will be a very lucky little boy indeed.

Dont let them fob you off.

Dummie_2

Thank you so so much for your support. You have no idea how much it means and how much it is helping me.

I spoke to DS's keyworker when I picked him up from nursery. The lady she had observe him was a resident teacher there. The key worker wanted advice on how she should interact with DS to get more of a response from him. I've made an appointment with the teacher and key worker for next Wednesday to discuss how we need to communicate with him. I didn't mention Autism to her. Felt scared to after what the HV had said to me just a couple of hours ago. Stupid I know. I shouldn't feel intimidated by her.

I had a S&L therapist come and see DS before. She was from Sure Start. I contacted them and she came once when he was 14mths and again when he was 18mths. She noted that he was extremely quiet and said she'll contact me in January (he's 2yrs on Boxing Day) to see if there is any improvement. If not, she will enrol us in a course she holds for other toddlers who are not talking.

Also, a week ago I received a leaflet through the post from my HV asking me to look at the 2yr assessment part of my DS's red book. I called her and asked if I needed to see her for an assessment and she said no unless I wanted them to see him. I requested an appointment to which she said one will be sent through in January.

In light of all the above, do you think I should still go to the doctor for a referral? Or should I wait for the 2yr assessment with the HV or wait for the S&L therapist to call from Sure Start? I'm thinking I should go direct to the doctor but don't want them to think I'm digging up holes everywhere and getting people to run around me IYKWIM. Will the doctor flogg me off until January anyway seeing that 2yrs seem to be the magic age here?

It's funny (not as in haha funny) because I'm not really a person who goes to the doctors. I will usually just bear with things unless it got really bad. But it seems each time I go I get flogged off one way or another. I'm sure the people the NHS puts on the front line are just there to make sure as little people as possible get through the net.

Oh well. I see another fight on my hands. I'm so scared though. I honestly don't know if I have the strength to fight. I will definitely fight though. If I don't fight for my son, who will? But I'm scared about the affect it'll have on me. I don't usually notice anything until the end as I'm so focused on reaching what I'm fighting for I don't read the signs my body is giving me until right at the end and usually by that time I'm in quite a state.

Thanks again for reading and thanks for all your post. I'm overwhelmed by how supportive everyone is on here. It's great having a support group to lean on and to urge me on when I feel defeated. <<<HUGS>>>

Nicki

In your position I would:

1. Have the meeting next Wednesday first. Be completely up front, and mention your concerns about autism and see what they say. If you don't raise it first, they may not, as they may not want to upset you. Even if you do raise it, they may avoid the issue, but you'll get a feel from how they react as to whether they think there is any significant cause for concern.

2. Following that meeting, phone the SLT again and tell her your concerns. She may bring the January assessment forward, but even if she doesn't, she will at least be switched on and know what to be looking for when she sees your son. She may even arrange for him to be seen by another SLT specialising in severe communication disorders, such as autism (in our HA, the two areas are split)

3. Assuming that you get some reassurance from SLT that your son will be seen again in Jan or before, I would then be inclined to wait until then. The reason I say that is that we are only talking about a delay of a few weeks (especially with Christmas looming) and your GP will not get anything organised for you before Christmas anyway. I don't know what your GP is like - some, particularly the younger ones, are excellent about investigating possible ASD, and some think the whole issue is over-hyped and over-diagnosed and are very reluctant to refer. (On a tangent here, I remember after my DD was diagnsed having to see my own GP due to my own illness. Usually he is fantastic. On this occasion we had to wait for about 30 mins in a crowded waiting room, which DD, then aged about 2 1/2 found impossible to bear. By the time we saw GP she was hysterical. He was very very grumpy about her "bad behaviour", had no understanding of the fact that she had an ASD and had been overstimulated by the environment, and said very peremptorily that she must be ill! Generally speaking he was a compassionate and understanding GP and I was really taken aback by his blind spot in this one area) Getting back on point, if there is any chance at all that your GP will have the same kind of attitude as your HV, you would be much better off going along to see him with the support of an SLT opinion.

I hope it works out for you. I don't usually log onto mse so many times in one day, but I keep checking back to see if you've posted on this thread, as I've walked in your shoes and know how intimidating it can be.

:grouphug:

fsdss

just let me offer you a bit of my advice from my perspective.

at the moment your son has not been diagnosed with anything. your HV may have just tried to calm you down when you saw her, she will have no option but to follow her proceedure of assessing your son. let her do it, it will add further weight to your sons keyworkers report.
the nursery will also be able to refer for an assessment through their senco.

usually the first signs of autism are noticed at around 2yrs (depending on severity of signs) and after extensive assessments (depending on waiting lists etc) can be actually diagnosed at around 4. so basically she's not wrong, although she could have worded it a bit better.

lil_me

Also to add to that if you want to PM me which area you live in I will see if I can find a support group in your area for parents of children with ASDs and see if they can help with who best to contact in your area if you are concerned. May turn out that he isn't, but the support from some groups can really help, especially when it comes to local knowledge/systems.

Your health visitor may or may not have been trying to stop you worrying, but agreed maybe wasn't the best way to explain what she mean't. Some children are given diagnosis under 4 but as it is a developmental delay the latter are nearer 4 or older. Some are much older than they should have been diagnosed at because of proffesionals ignoring parental or schools concerns.

Even if you are barking up the wrong tree, try to concentrate on getting across your opinion on the behaviours and development areas which concern you rather than stating a possible diagnosis. Write all your concerns down, attend this meeting with an open mind but again in writing any questions you have, as you may forget them once you get there, and go from there.

Good luck, go on your instincts, thinking of you x

Savvy_Sue

I would agree that talking to your son's keyworker is the next thing to do. Ask them where you go next: it may be GP to ask for a referral, but at least you're going armed with another professional's opinion rather than as a neurotic mother (which you're NOT, btw!) And I would also mention that you have become aware of the similarity between some of his behaviour and behaviour on the Autistic Spectrum (which is very broad!)

My reason for suggesting this is because when DS1 was 12, I had a very roundabout conversation with the school doctor about his 'emotions' (or lack of), need for routine, need to know what was happening etc. I knew she was trying to tell me something, and knew I knew the name of it from hearing a bit on Woman's Hour which had made me think "Sounds like DS1!" Just couldn't think what it was! Eventually my brain engaged, and I said "Are we talking mild Asperger's Syndrome here?" "I'm so glad you asked that," she said, "I wasn't sure you'd know what it was." Still not sure I do, but I do find it helpful in reassuring me that my son is quite normal - for someone with AS! If only the rest of us saw life the same way as he does ...

So, this way you're not saying "I'm worried DS is autistic", but you are alerting them to your concerns, and it seems they also have some concerns. And if they are starting to think ASD, at least they know you're not going to be completely phased by it.

Hugs.

Cazzywazzywoo

My son is profoundly autistic and was diagnosed at 2 years and 3 months although we started to raise concerns as early as 16months.

Looking back the key concerns at this stage were
-turning around for noises eg sweets being opened, but not for verbal conversation
-unable to point or wave (12years old and still unable to wave)
-unusal behaviours -such as putting stones in his mouth
-interaction on his terms -although he liked books it was very repetitive -needing to repeat sentences etc
-leading me by the hand to get things for him
-playing along side other children, not with them.

At the time my in laws thought I was mad and imagining it -but you only have to spend 30seconds with him now to know that something is 'not quite right'. Go with your instincts and push
Good luck
Cazzy

Dummie_2

Cazzywazzywoo wrote:

Looking back the key concerns at this stage were
-turning around for noises eg sweets being opened, but not for verbal conversation
-unable to point or wave (12years old and still unable to wave)
-unusal behaviours -such as putting stones in his mouth
-interaction on his terms -although he liked books it was very repetitive -needing to repeat sentences etc
-leading me by the hand to get things for him
-playing along side other children, not with them.

Your list sent a shiver down my spine. Apart from the unusual behaviour, DS matches all of them. But what is so confusing is that he doesn't match it excatly. For example, he'll wave once in every 100 times we ask him but most of the time he'll just blank us out. He'll lead me by the hand to get things for him and likes taking my hand to clap and my hand to point but he has also occasionaly clapped and pointed himself. When he's holding my hand to point to a picture in a book that I'm saying the word for he will repeatedly pump my hand up and down to get me to say the word repeatedly. He ignores other children.

I have somewhat calmed down today. Not so freaked out. I've decided DS is not Autistic until he's diagnosed. I will just be open minded about the whole thing and get answers for my concerns in the same way I would if it was concerns for his eating habit or sleeping habits etc.

I'll go to the meeting on Wednesday taking a list of my observations and similarity in his behaviour and that of children showing early signs of Autism to see what the keyworker and teacher has to say. I'll then have 1wk to digest all this before I see the HV so I can put together my case. I'm not going to break down. I'm not going to freak out.

The information you have all given here on this thread is going to help me put together my questions. So thanks so much. I have obsolutely no knowledge on Autism so everything that has been posted is an extra piece of information.

I'm thinking that I should pretend I actually know someone who's child is autisic and say that my friend mentioned the similarities between DS and her child when he was that age. What do you think? I've had negative responses when I've brought up that I've been chatting to people on the internet before!!

elaine373

Dummie wrote:

Your list sent a shiver down my spine. Apart from the unusual behaviour, DS matches all of them. But what is so confusing is that he doesn't match it excatly. For example, he'll wave once in every 100 times we ask him but most of the time he'll just blank us out. He'll lead me by the hand to get things for him and likes taking my hand to clap and my hand to point but he has also occasionaly clapped and pointed himself. When he's holding my hand to point to a picture in a book that I'm saying the word for he will repeatedly pump my hand up and down to get me to say the word repeatedly. He ignores other children.

I have somewhat calmed down today. Not so freaked out. I've decided DS is not Autistic until he's diagnosed. I will just be open minded about the whole thing and get answers for my concerns in the same way I would if it was concerns for his eating habit or sleeping habits etc.

I'll go to the meeting on Wednesday taking a list of my observations and similarity in his behaviour and that of children showing early signs of Autism to see what the keyworker and teacher has to say. I'll then have 1wk to digest all this before I see the HV so I can put together my case. I'm not going to break down. I'm not going to freak out.

The information you have all given here on this thread is going to help me put together my questions. So thanks so much. I have obsolutely no knowledge on Autism so everything that has been posted is an extra piece of information.

I'm thinking that I should pretend I actually know someone who's child is autisic and say that my friend mentioned the similarities between DS and her child when he was that age. What do you think? I've had negative responses when I've brought up that I've been chatting to people on the internet before!!

Dont apologoise to ANYBODY for being concerned. Your son may or may not be autistic, but as a caring mum, you should be taken seriously. As far as your Health visitor is concerned...that just makes so angry. So what if you have been depressed before,That doesnt mean you are looking for problems. I also find it amazing that one of the nursery teachers asked some-one else to observe before they raised concerns with you. Maybe thats just me being funny, but at least it gives you more reason to suggest that your son needs a proper assessment.I hope everything turns out well for you.I find its far better to face my fears than to spend days/weeks worrying about something Demand the best for him and make no apologies for asking.

Savvy_Sue

Dummie wrote:

I have somewhat calmed down today. Not so freaked out. I've decided DS is not Autistic until he's diagnosed. I will just be open minded about the whole thing and get answers for my concerns in the same way I would if it was concerns for his eating habit or sleeping habits etc.

That's the spirit! And even if he IS diagnosed as autistic, it's not a death sentence! It may be very hard, but it's not the end of the world. There is far more support and help out there than there used to be. I am sure I had no idea what autism was when mine were born!

Dummie wrote:

I've had negative responses when I've brought up that I've been chatting to people on the internet before!!

:rotfl: Know what you mean! With DH, I just refer to my MoneySaving Friends. With people I think will react that way I say "I heard of someone" or "I was reading about", but in your situation I might well say "I have a friend ..." Because we're all friends here, aren't we?

Hugs ...