Early signs of autism? Mercury?

[guyshahar]

For the past couple of months, our son (21 months old) has been displaying what we are afraid might be early signs of autism. He plays with us a lot less (and seems to have less fun in general), doesn't respond to his name and rarely makes eye contact. He doesn't seem to show understanding of basic instructions or communication. He also doesn't chew solid food (he just lets it fall out of his mouth) and is not talking yet apart from copying certain sounds in quite a baby way.

We are going to ask for an autism check, but do not have a lot of faith in the NHS to diagnose correctly or give the appropriate help. What advice does anyone have to help our son?

Could this be the results of mercury in his immunisations? Are there any good ways to clear this from his system?

Hi again

UPDATE - We found out that there are Child Development Centres (as Eaviebaby suggested) where all of the various tests can be done at one time, a diagnosis made and a way forward prescribed. We asked the Health Visitor about refering us to one of these centres (rather than the process of a separate hearing test and then a speech test and then a paediatrician and then perhaps a referral, with several weeks or even months between each step). She agreed that this was a good idea and confirmed that a health visitor could make the referral, but admitted that she was not allowed to because of the expense!!! This means that children are missing crucial months of treatment at a time when action is most critical. We will go to see a GP today, but she was even more inflexible last time we saw her.

Lingle, no he did not come to us for help, but we were already close to him and he was happy to be picked up. He did seem distressed at one point during the interaction when his mother looked like she was going to move away.

I will post a more detailed message later on the Special Needs board with more information about his behaviour, and maybe even some links to videos of him in various situations. Hopefully, this will help people to help us....

My daughter saw her doctor and health visitor when her son was 2 because she was concerned he may be autistic an dnow 3 years later she is not much further forward. She has seen paediatricians, neurologists, speech therapists, educational psychologits,.. and the best the paediatrician can come up with is ADHD - which my daughter thinks is totally wrong !

Her son can be active but not that hyperactive and he can be easily distracted and lack concentration but not to the degree of ADHD

The paediatrician has told her that they would not diagnose him until he is 7 anyway but she is leaning towards ADHD ??!! Menawhile, her son is getting further behind in his school class..

Davsmumm - This is exactly what we are worried about. We are losing valuable months when treatment could actually make a difference, but it feels like we need to fight for every tiny little appointment - and then wait for weeks or months for it. By the time he has gone "through the system" it is likely to be too late to do anything for him.

We don't know what to do or what we can do to help him. We are very happy to look for potential solutions outside "the system" if they will work, but there really seems to be an urgency to it now. I have read that any treatment before 2 years of age has a much higher likelihood of success. We have 2 months.......

do you have private health cover? you can go privately to a developmental paedatrician. That is the route we took - as our GP, HV's refused to refer us via NHS.

Firsttimer08 - we don't sadly. We had the idea to get it for him, but the issues were that as we have already seen a GP about this, it is classed as an existing condition and thus not covered.

However, although we are not well-endowed financially, we are prepared to pay for a private consultant, as this is the most important thing for us to get sorted.

What was your experience of using one? If you have one to recommend, who would it be? We have heard about Gillian Baird, who is supposed to be wonderful, but she does not see people privately, and my GP refused to refer me to her - said she was not able to due to recent changes in how the NHS works, which means she can only refer in her immediate area.... not sure if this is just an excuse.

If I can be of any help in sending informatio0n please do mail me via the PM system- as well as having 4 boys (2 dx'd asd, one being assessed for it and one being assessed for adhd) I am in the last stages of an MA in ASD and have info I can send out.

Early input ahs been proven to impact hreatly on success rates. There are issues in early diagnosis and sometimes a dx may need tweaking 9for example a non verbal 2.5 year old coudl still develop speech before 3 which is the difference in part between autism and as) but a dx of ASD is fine.

Please don;t trust anyone who can cure your child. They can't, nobody can, if they could the state would loe them as ASD costs a small fortune.

Hearing tests are the first part of a multi fisciplinary asessment anyway, great idea to start with that.

Gillian Baird and Lorna Wing are fantastic but really tertiray level experts- so the most complex of cases, eg where child also has a complex learning disability or physical disability.

"Lingle, no he did not come to us for help, but we were already close to him and he was happy to be picked up. He did seem distressed at one point during the interaction when his mother looked like she was going to move away."
sounds like the regression hasn't gone deep enough to disrupt the basic bond of trust then? But that he hasn't got the ability to initiate much communication yet? (eg turn to you for help)? Is that close?

"I have read that any treatment before 2 years of age has a much higher likelihood of success. We have 2 months......."

I'd be cautious about that, even if (still big if) this is atypical brain development leading to communication problems. "Treatment" kind of suggests there is a medicine for communication disorders. This isn't like seeking treatment for a disease.

I would get the hearing test asap whatever else you do. I have my own views on fights but all I would say is keep a diary of your observations of Daniel and keep a separate diary of your encounters with the NHS. When you're reading what's in one diary, you're focussing on learning about Daniel's issues in an alert attentive way. When you're reading what's in the other, you're focussing on amassing evidence for potential future battles. Neither is a substitute for the other.

Daphne Keen is always a name mentioned when people go private. Highly respected, talks sense.

lingle, I am sure you didn't mean it to come across the way it did, but talking about regressions going "deep enough to disrupt a bond of trust" is not helpful.

a 2 year old getting distressed because his primary carer may leave the room means very little in a diagnostic way.

Hi

I don't think it is that he doesn't trust us. He does allow himself to be comforted sometimes, and sometimes even pulls us into a room together for a short play session.

Went to see the GP yesterday. Asked to be refered to Gillian Baird or her team, who posters on here seem to think is excellent. She said that there had been recent changes in the NHS and she was no longer able to refer to anywhere outside our area - even the Child Development Centre in Hillingdon (we live right next to it in the Hounslow area). She didn't want to refer us to anyone at all, but after a long fight - and a reminder that she was a mother as well - she referred us to both CAMHS (Child and Adolescent Mental Health Service) in Hounslow, and to a community paediatrician specialising in child development. Don't know how long we will have to wait for these appointments, or how much we should expect from them (other posters here don't seem very impressed with the process), but at least it is something.

Starting to look for options outside "the system"..... We feel this is so urgent, but the doctors are all "wait and see".

from my experience, I would steer well clear of camhs, although the community paed not always much better.

we waited 6 months or so to see a community paed, and then the answer was to "wait and see" for a further 6 months. and then again, wait and see for another 6 months.

Try getting in touch with Daphne Keen - have heard good things about her (private, so costly, but doesn't beat around the bush)

Oh I'm sorry. should have followed the rule of not posting about things outside own experience which doesn't include any loss of skills.

I'm glad you have a referral, even if not quite the one you want.

I saw your thread on SN board. there were some big problems with privacy there a while back (after my time). I guess that's why you got the advice you did. I looked at a couple of minutes of a couple of the videos. To my surprise I found them hard to watch because you and your family reminded me so much of me three years ago and it brought back some emotions that I had forgotten about.

I felt that your son has a good team around him.

I noticed in one video that your DS (as we shall now call him!) responded very well to changes in pitch of voice/sing song melodic-type voices. My son was like that too. Even up to a year ago (so age 4) I was still talking using sing-song intonation to reinforce meaning. I wonder whether he might respond to "uh-oh!" when something is absurd/wrong. I used to like using that "word" because it was like a bridge between playing with tone and a word with real meaning. You make a harmless non-distressing change in his routine (like putting your dinner in front of him instead of his or something like that) then say "uh oh!" as if it was the more absurd thing ever.

I noticed that, as you say, he didn't respond to his name at all. I felt that the play you were trying to interrupt in that video looked like fun though - I suppose professionals would say it was purposeful but who knows.

You are so far ahead of me. I can remember when DS2 was 3. DS1 shouted out "DS2! DS2!" and DS2 just joyfully repeated "DS2" thinking it was part of the game and I suddenly realised he didn't know his own name and that was a hard moment.

I think the More than Words book is going to be great for your family and if you can all use it together that will increase the benefit further.

best wishes.

I'm glad you found out more info about Child Development Centre's it's not good news that your HV will not refer though. I know that Hillingdon CDC do private assessments which would cost approx in the region of £2000.00. I have a feeling that two years old is the minimum age for their assessments but I would suggest you ring them direct to get all the info.

It's not easy I know but I wish you all the best.