Autism, advice and answers please?

[Crawling]

I am not sure if I am posting in the right place but if not can you redirect me please. My DD has been having speech therapy since she was 2 and she is 3 next month, she is still quite behind in her speech and her hearing is fine. As she is also showing difficulties in some other areas my speech therapist has referred her for a autisim assesment with a pediatric doctor.

I was wondering if people could tell me about their journey to a diagnosis, how long it takes and what sort of assessments my child will be given. I am aware that mychild may or may not be autistic but I would be gratefull of any advice or information other parents can give me. I was also wondering about what this is likely to mean long term for my child, I know very little about autisim but I do know there are grate variances in each child so appreciate if you cant really say what the level of impact this will have on my child but I would just really like to understand get some information, and some advice on helping my daughter. Thanks in advance for anything you can help me with.

Crawling. I was in your position a while ago and the first thing I did was to trawl through the threads on here -- there are lots of them from people starting on the road to diagnosis and some fantastic advice in response. This will perhaps give you some ideas, or some sense of what might be involved (as you say, it is difficult to pin things down when there is so much diversity).

This should keep you busy until some others come along to advise!

I know that sometimes a referral means a long wait. Has there been any kind of acknowledgement from the doctor that they have received the referral? They should be able to give you some time scale (and if it is too long you can think then about arranging it privately).

There is NICE guidance on diagnosis in children released last year which sets out best practice. Look on NICE website.

In our case we had the first visit with paediatrician. One visit at home from SALT and a clinical psych. One visit by SALT to nursery. Plus nursery was asked to send a letter with their views.
We then had a team meeting where the diagnosis was given (the professionals met for an hour before we got there)
The whole process from seeing the paed to the meeting was 3 months. DS was a very clear cut case though as had massive massive regression.

They will be reluctant to give a view on outcome at 3.

The other issue they will be thinking about and may or may not take a view on is cognitive function. I found that a shock as no-one had mentioned it during the visits but we we got there they said and basically we don't know if he has learning disabilities on top of his autism or not. I was not expecting that. As it turns out he probably hasn't but they said he was too young to test and would be a case of wait and see.

www.mumsnet.com/Talk/special_needs/1216322-Is-anyone-else-starting-out-on-the-road-to-a-diagnosis-Fancy-holding-hands-on-the-bumpy-path

There is also this thread.

Hi Lionheart thank you I have not heard anything from the doctor yet but we have seen her before to test DD hearing, she said she was concerned about DDs dislike or physical contact and her not making eye contact,also she would not play or do anything while the doctor was there, she reccommended when DD start school she has a helper? I am not sure what this is though.

Hi Agnes thank you for your reply may I ask what regression is?

Sorry x posted thank you Lionheart I willread that now.

The route and the length of time it takes depends a lot on which area you are in. In my PCT my HV referred us to a SALT at 2.6, who must have been deeply suspicious. she referred us to a 4 week SALT clinic at 2.9 where the SALTs suggested I go back to my HV and ask for DS to be assessed. The HV assessed him at 2.11 and referred us to a developmental paed, who saw him at 3.1 in a clinic with one of the SALTs. The paed suggested ASD straight away when I asked her 'what could it be?' He started a SN Early Years school in the meantime and was observed twice more at the school by the paed. He had an official DX at 3.5. His DX was quick for my area as that particular paed is reluctant to DX unless she is very sure. My DS was pretty obviously ASD, despite no regression at all.

Some areas use CAMHS and/or clinical (not educational) psychologists and some insist on ADOS for an official DX. Some use DISCO instead or as well.

Crawling, Agnes will have a better understanding than me, but regression is when a child loses developmental skills they once had, such as losing speech, losing eye contact, losing social and play skills, etc. My DS didn't regress, he just stayed static in his development from about 15 months until he was nearly 3.

Thank you EllenJane the information you have given is really helpfull. DD is getting better with some areas like speech she used to poke her eye but this has stopped and she has recently started pointing at things , but her social skills are getting worse she is getting more stressed and reluctant to interact with people she has not accepted. She got quite upset in therapy the other day because the receptionist said hello to her and was crying and wouldnt leave the room.

Yes what Ellen said. He had been social, had friends, talked in 2-3 word phrases, made eye contact, pointed to things and then stopped

Hi Crawling, I had to post as I am in a very similar situation to you. I have a dd who will be 3 in Sep. She has speech therapy now but also has other issues such as poor eye contact, poor concentration, jumps around a lot, licks things, lack of interest in others, doesn't respond to her name, doesn't play with other children etc. Also had hearing tests to rule that out. We got referred to paed by HV at 2yr check, saw paed in Apr who just basically said she will see her again in 6months when she turns 3.
I have been on mumsnet SN since dd turned 2 and have learned sooo much from here.
I knew nothing about autism before this but have learned loads. Apart from reading threads on here one thing I would recommend is the Hanen book 'more than words' not only does it help with ideas for communication+speech therapy it also helped me understand dds jumping/licking things, it explains about hyper/hyposensitivity.
I was also told by a private speech therapist before xmas that dd would most likely need additional support in school+ I know its very hard to hear that your dd might have difficulties in school. This is done by getting a 'statement' which gives the school funding to provide additional support (could be somebody to do 1:1 with your dd for a certain number of hours a week to help her) I am still very new to this area and have not been through this yet so maybe somebody else could give more info on that.
Any other questions please ask as I'm waffling on a bit now and not sure what to say that is relevant to you. One other thing I found has made a huge diff in dd eye contact+concentration is vitamin supplements (have a look at the tinsley house support thread) I have been giving dd omega 3+the floradix since Jan and I have seen a big difference.

Osospecial

Thank you it is very helpful thank you.

DDs main things are she doesnt like to be hugged,
low eye contact she is closest to me and will hold eye contact for about 2 seconds.
She doesnt like guests and hides upstaires, (I have had CPNs visit every week for 2 years and she still hides upstaires) my Mum sees her most days but she wont talk in front of my mum, she was here all day for a week and didnt come on the next day then came the day after DD hid under the table for 3 hours.

She sometimes wont share things with anyone but me then after a day or two her dad is allowed to look.

She used to stick her thumb under her eyelid and pull sometimes it would flip inside out and she would then cry and I would have to put it right.

At her two year check she only had two words she now has about 70 but only 3 are clear the rest miss out bits, like spider is pi. (she loves spiders)

She started pointing at 2 years and 4 months when my DC3 was born (she wanted the baby)

She doesnt sleep or eat well.

She doesnt listen kind of ignores me and if I take something away she smacks her hand.

She also spends a lot of time sucking her fingers, stroking her ear and rubbing her feet.

I am not sure which of these may be symptoms or not though. She also has vitamin supplements and her speech seems to have developed since then.

I know what you mean about not knowing what are symptoms and what are not! I question everything dd does as its horrible thinking all the time 'are they or aren't they' sometimes I think dd is fine and I'm overreacting then others I'm convinced its autism. Dd didn't really have any words at 2yr check and now has at most 50 but like u said not all clear. Her understanding is what I worried about more though as she can't understand simple things like 'dd go get your shoes'. etc, she has to be physically shown everything.
I waited 9months for Speech therapy to start on nhs but now dd is having 5week blocks and I have to say they have been great, they seem to deal with everything, they said they would help with getting a statement if needed, they are helping dd with listening, concentrating, turn taking skills as well as speaking and they are sorting it so that dd will have some 1:1 help in a playschool starting in Sep to help get her ready for school so I'm over the moon about that as I'm worried how she will cope in school.
The best advice I've had on here was not to concentrate on worrying about if its autism or not, it can take yrs to get a dx and even then nothing much changes, its best to concentrate on what you can help them with now (in my case her speech and understanding)

I know what you mean about not knowing what are symptoms and what are not! I question everything dd does as its horrible thinking all the time 'are they or aren't they' sometimes I think dd is fine and I'm overreacting then others I'm convinced its autism. Dd didn't really have any words at 2yr check and now has at most 50 but like u said not all clear. Her understanding is what I worried about more though as she can't understand simple things like 'dd go get your shoes'. etc, she has to be physically shown everything.
I waited 9months for Speech therapy to start on nhs but now dd is having 5week blocks and I have to say they have been great, they seem to deal with everything, they said they would help with getting a statement if needed, they are helping dd with listening, concentrating, turn taking skills as well as speaking and they are sorting it so that dd will have some 1:1 help in a playschool starting in Sep to help get her ready for school so I'm over the moon about that as I'm worried how she will cope in school.
The best advice I've had on here was not to concentrate on worrying about if its autism or not, it can take yrs to get a dx and even then nothing much changes, its best to concentrate on what you can help them with now (in my case her speech and understanding)

Osospecial that is exactly how I feel, the is it isn't is a symtom am I over reacting? I also worry about school, its great to speak to someone going through the same. I am trying not to focus on diagnosis but its hard sometimes. I am glad about your good news with the school.

Hello Crawling. Dd1 was initially referred to community paediatrician at 22 months for not standing. Diagnosed with hypermobility and hypotonia and significant speech delay at 23 months. I mentioned to paediatrician that I'd done CHAT questionnaire online few months previously and the result suggested autism. This was noted but that is all. Several months later physio spoke to SALT and then dd1 was referred to the communication clinic for assessment to determine what was behind speech and Lang delay. Think we were referred in Oct 2011 (dd 2.9years) and seen on February 10th 2012 (date plus everything to do with that date etched in my memory!). We filled in a questionnaire at home as did playgroup (can't remember what it's called), paediatrician did a griffiths review and submitted all his reports. At the clinic we saw a specialist SALT and consultant paediatrician. They then met in private briefly before giving diagnosis. Dd1 was 3.1 years when diagnosis given.

Dd1 starts preschool after summer hols. We are in Edinburgh so no statements here, but so far great support. Of dd's 12.5 hrs of preschool, 10 of those will be with 1:1. Dd still has significant speech delay. She lost words. Aug 2011 we had 17 words, now maybe 5 or so, but often these are difficult to understand if you don't know her!

I worry a lot about her future, and try and control this worry by only focusing on certain things at a time eg finding the right preschool for dd and getting help in place. In less than a year we'll be viewing all the different schools. Luckily dd has a January birthday which in Scotland means we can delay her entry into primary for a year. We have to submit all paperwork re applications around Xmas before dd will start school.

Your dd started pointing when baby born is interesting as my dd finally mastered walking when her baby sister was born. Dd1 seems to have trouble with processing skills and cannot manage stairs yet. Think this is related to her autism.

HTH sorry so long!

Thank you seaweed this is very helpful. DD took a extreme like to her baby sister and wouldnt let anyone but me and her hold her, but it wasnt jealousy she liked the baby and wanted to hold her all day even when there were no guests. It is interesting that your DD also developed when the baby was born .

Sadly it sounds like lots of you have had a very rough ride .

I know, its so hard, I still do think I just wish I knew one way or another but I'm trying to be proactive instead of waiting for dx before deciding what to do (which I think I was a bit before) if that makes sense. It is nice to speak to somebody who knows how you feel, feel free to pm me if there is anything u want to share/ask or just want a chat again :)

Hi crawling and welcome to the board
I have a big boy (15 years old) with asd
But your comment about your child's sibling struck a chord with me. Ds was 5 when dd (9 years neurologically typical) came along and she made a huge difference to his social development. He's not keen on physical contact but is still happy to give and receive it from his sibling. She was always ' his baby' . He has learnt loads about human behaviour from seeing her develop .At 15 and 9... They are still each others best people and he is still very protective of her. 😊

Thanks troutpout that is so lovely to hear, he sounds very caring. DD although younger sounds like she is developing a similar relationship with DD2 and its nice to know it will stay. She is not as close to her older brother though strangely but is still quite close to him.