Your child's autism diagnosis: Was clinician negative or positive?

[Interestedmum]

Just out of interest, I wonder what happened when your child(ren) were diagnosed with autism. Did you receive negativity or were they helpful to you.

Negative:
'your child has autism, have another one,...
'enjoy' him/her...
'I am sorry to tell you that your child has autism',
'did you drink, smoke, were you stressed during the birth'
'would you like to go somewhere to cry?'
'your child will probably never talk, I am sorry',
'you must grieve for the child you thought you had',

you get the picture....... as opposed to positive comments

'how can we help you, here is information, you can get through this, its not the end of the world, plenty of people who have autism do just fine, what support do you want/need and if you dont know, come back to me ASAP, etc.

Negativity about our children is everywhere and I know that paeds and other diagnosising clinicians are still trying to make us believe our children are somehow less than they are just because of a label.

I have one child with autism. During diagnosis, I had the full-on negativity and no help)

I would dearly love to know what what said to you all and to know whether parents like me are still being handed out the negativity or if things have really changed.

thanks so much

i got dx in writing and letter said dd needs residential college and support groups to try and explain dx.... copy was sent to camhs and said camhs should provide support....camhs response to us was ''get on with it we don't do support it's not our job''...they wouldn't even talk to us about dx or what we can do to help.

When ds was dx'ed 13 years ago it was pretty negative. "won't have normal speech, will never be independent, you will need support from SS, the extreme challenging behaviour will remain etc"
Dd was dx 7 years later and it was more positive in so far as the paed acknowledged that she was benefiting greatly from early intervention and that living in an autism friendly house was a good thing for dd.
Probably the biggest negative was advising that any further children were very likely to have autism and recommending genetic counselling for my older NT kids.

The psychiatrist who dx our son was good as she was the first person to listen to our concerns but she did say to us on a couple of occasions.."You need to accept your son is not normal and will never be normal"..........................he has HFA.

We don't have a definitive diagnosis yet - just a rather tentative one at this point, as the paediatrician wants to wait until he's a bit older both physically and developmentally to commit fully. However, when speaking to us, she has basically said he has ASD traits as well as ADHD (amongst other things), and is quite positive about his future, pointing out that many children with ASD and ADHD learn coping skills and, depending on their degree of difficulty, do quite well. She maintains that obviously they will need support of some kind, to varying levels, but she is still quite positive. She isn't all flowers and sunshine though - and I mean that in a nice way. She is "little sally sunshine" and focus only on the positive and ignore the negative. She is very realistic and doesn't brush things under the carpet either. I have to say we are well pleased with her - she is very proactive and likes to be involved in multi-agency meetings and is quite happy to speak to us or the school if needed. And if we have an issue with any other medical professionals that we have been referred to, she is happy to help smooth things. Recently, we have simply kept in touch by post, as we send her an update here and there when there have been new developments (such as DS2 being put on inhalers for asthma). She is also quite happy to fully participate in letter writing and such for statementing and DLA purposes. But I digress... sorry... can't tell we really are happy with our paed. She was not "doom and gloom" when explaining what she felt his tentative diagnosis was.

sorry...typo.... she ISN'T "little sally sunshine" LOL

Our DS was diagnosed with Aspergers when he was four and am convinced/grateful that the way in which the paed told us went a long way to how we approached/handled the situation. He discussed the challenges that would lie ahead BUT was also brilliant at highlighting the positive side of having Aspergers (amazing ability to focus/analyse etc) and how we could work with him to really harness these skills whilst working on the social skills side etc. We still went through a very dark time after the diagnosis but am sure that what he said and how he said it helped me climb out of the hole a bit quicker than if he'd been all doom and gloom.

i think we had very good experience, but that was cos we were told by the excellent LD pychologist, he allowed us time to get heads round it answered questions and I knew he liked ds and thought he was lovely, so that felt good he also made another appointment for a week later to see us again, so we had time to think of questions. He was fantastic I have to say... (I refused to see the pychiatrist who shoulf have been at the meeting too as he was so appalling during the assessment! )

We had a lovely paed who specialises in ASD/ADHD and other developmental issues. We had an initial meeting at a clinic which included a fantastic SALT also (who was the person who had initially, gently pointed out to us that DS needed an assessment.) At the end of the (long) appointment the paed said she would need to see DS again a few times to observe him, (he was 3.1) before she could DX.

She asked us if we had any questions and we asked if she could tell us what she thought it could be. She did say that not everyone wants a name, were we sure. (We were!) So she told us she thought he has an ASD or a language disorder of some sort. We were pretty stunned, TBH, I'd been thinking ADHD myself, and knew little about autism beyond the stereotyped closed in child.

She suggested we went away to read up on it, and when she finally DXed ASD, 6 months later, we were already convinced it was ASD. All our denial and initial grief were behind us. It was a relief to actually know and continue with the PECS and Hanen etc we had been doing. She referred us to an Earlybird course and gave us details of the local Autistic Society and another general SEN support group. He was pretty classically HF ASD, with very little speech and completely on his own agenda, so AS was never considered.

I feel that the paed was very warm and supportive in how she told us. Her words weren't necessarily positive, but her manner of delivery was.

The SALT helped us to get DS a placement at an outstanding Early Years Special School, before his DX which was great early intervention, where all staff were Hanen trained and PECS were used properly (not just once a day at snack time.)

This was all 8 years ago and I don't believe we could have had a better start. Full time MS school at 6 was another story....