ASD Diagnosis - pros and cons of making it formal?

[2boysnamedR]

So as some of you might know DS who is six got a dx of dyspraxia and spd (which I don't have spelt out as spd anywhere in reports). I have always though he had ASD but it was dismissed at his dypraxia dx (smiles happy and makes eye contact).

We got a private EP in for his statement appeal and asked her to look into ASD again as he has never been formally tested. She visited him at home and school and I did two questionnaires. She said on the GADS he scores for ASD and on both visits he never volunteered any sppech without prompting so she thinks he has ASD but its subtle and is effecting his social interaction (he has no routines traits at all and is ok with change as long as he is prepaired). Laid back and wants to please (at least I think he does!).

Not sure if I want to get him formally dx'ed as he has the dcd, spd (which I need to make formal really) and EP has said language disorder - not a lang delay. He has learning diificulties too.

So ASD I guess would be on his records for employers to see. I think he has enough dx for people not to ignore his needs. should I get him a formal dx? Will it help his statement? I don't know if we would be better watching him to see if it becomes a issue and talking to him about it when he can understand that its something he will need to a aware of - in relationships and stressful times in life.

I don't know what to do. Every other dx has been poo-pooed by family and friends so is this really going to help? I can see clearly he has ASD but its not obvious to many others.

Dx overload!

[chocisonabikinidiet]

if he does have indeed ASD (suppose it would require a formal assessment like ADOS to dx??), the I would want to get him dx.

DD has ASD but it really complex (s&l disorder, SPD, LD) but we only got really help once she was formally diagnosed and I think it will be useful also in the long term (school provision, statement etc). for us it did not have any downsides - it only made things easier.

I would have thought an employer would only know about disabilities as long as the employee declares them. but this is nothing I have ever really worried about as I don't think DD will ever be able to hold down a job anyways.

[2boysnamedR]

Thanks, I'm hoping that DS will be able to get a job - but its hard to say right now. Some days I can't see him moving out.

I guess these are all questions for his pead. I have known since he was 18 months old he could have ASD. I just wonder if anyone would take it on board. I am denial central with family and school only take on board what they have too e.g paper reports from the NHS so on the flip side they wont take on the ASD stuff unless I get him dx'd

[bjkmummy]

the ASD dx can open more doors to support ie autism outreach. I am going through similar with my DD at the moment - she is with margo sharp right now ! if an assessment showed asd for her I like you would be torn but I think I would want a formal diagnosis so that everyone would understand her needs fully. it can feel like dx overload - it depends what dx comes first - with my elder son it was asd and its kind off stopped there with no other dx although im sure there probably is! my other son started with adhd but we knew it was asd and now after a tribunal his list is endless!!! similar happening with my daughter with the dyslexia first but others now coming out as you get them properly assessed.

how is your appeal going? I really hope your LA would have seen the light and agreed to statement. its one month until I find out if I will get the NIL or its a statement

[2boysnamedR]

I keep wondering how your getting on bjk. My deadline to submit attendance was today. I wrote quite a damming summary and had a private EP in last week. Hopefully the LEA have been so incompetent it will be dropped. The private EP agrees they have been very sloppy. The LEA EP report was rubbish etc. I had some real gems from FOI requests which again show they have been edging on incompetent. Private EP thinks DS is marginal so I am hoping they wont want the shame of tribunal - but the tribunal clark for the LEA (who was very polite) they will fight it all the way ( they said that before and didn't). Quietly confident here

[2boysnamedR]

Private EP bases that on what she knows - I have more evidence which shows he isn't marginal - overall its bad enough

[Schoolsoutforsummer]

I danced the day the audiologist said DS1 didn't have APD -it was one less thing to have to tackle. Multiple diagnoses are overwhelming, particularly, when they all come at once.

But actually, I would say it is better having them all listed, as understanding how they all fit together gives me better insight into what makes the boys tick.

There will always be nay-sayers and quite a few of them are so-called professionals but by and large, a diagnosis is essential for trying to access the help and support that is needed. Conditions also develop and change over time and what is OK now, might be the root cause of difficulties later or on the bright side, if you can get intervention now, life can be do-able long term.

[tempe48]

ITA with Schoolsoutforsummer - a label should be a signpost to help. Its a shorthand to save time, rather than spending half an hour explaining lots of quirks traits, behaviours, etc. Its only with a dx in the future, that reasonable adjustments can be asked for and made. Autism is a well known condition, there is the Autism Act (can't remember its proper name), the NAS and several other autism charities. Certainly here, there are plenty of activities for families with a child with ASD, relaxed screenings at the cinema, regular offers of relaxed performances at theatres in London....

As for family, I can't think of one friend with a sn child, whose family have been totally supportive, been there for them, taken the dx on board, etc.....Denial big time, in my opinion!

[bjkmummy]

Well my daughter was dx with asd this afternoon so now need to follow my own advice I guess. That all 3 with asd so I've got a full house of children with autism. She will struggle in mainstream secondary - now on a collision course for my 3rd tribunal. I'm still keeping everything crossed for you 2boys that your LA see sense and end this farce ASAP.