child with ASD diagnosis but not sure if they have got it right!

[Larissaisonline]

Hi all
This is my first time on this site but would really appreciate any experience that any of you have had.
My Ds is 4 and was dx'd with asd at 2and a half years old, due to the fact that he wasn't talking and was showing some typical asd symtoms- turning off lights etc, fasination with weird things that you wouldn't expect from a two year old.
He is now speaking really well (turned 4 in august one of the youngest) has started full time school where he is doing briliantly but still is behind for his age. School are pushing for him to be statemented which am pleased about as I want him to get the help BUT
He scores 28 on the CARS which shows that he is not asd. He is very sociable and loves to be around people. He like to try new activities etc and does pretend play etc.
I fell that because he has been diagnosed with ASD that that what he has as far as they are concerned, I think he needs weekly SALT as this seems to be the main difficaulty, not just a once a term visit at school where she wanted him to have a visual timetable etc, I had to tell them not to do it as he has never needed it!
I guess I just feel like I dont really know what is wrong with him! He is a very strong willed little boy (like his dad) which I think can be taken as an asd trait I am not sure!
I feel as though I have lost my confidence as a mother and don't know if I am in denial or just driving myself mad. I know that I am very fortunate to have had a dx as I know that it can take years in some cases. I am just not sure if he has been stuck in a box with this label and now only be treated a certain way because of it.
Thanks in advance!

bump

Thanks

You are always entitled to a second opinion from any NHS tertiary service (i.e. one of the specialist ASD centres). They include, the Newcomen Centre at Guy's Hospital, the Michael Rutter Centre at the Mausdley Hospital or the National Centre for High Functioning Autism at Gt Ormond street.

You can contact them for referral criteria but essentially your GP should be able to refer directly if they have the consent of your local CAMHS.

The CARS test is only a screening tool and is not a diagnostic tool but I would trust your instincts and get this investigated. Go to the experts - you're entitled once you have a diagnosis.

Thanks, I did not know that I was entitled to get another opion when he had already been diagnosed.
Everyone from his SALT to OT to Paed to Autism Early Years specialist to his keyworker at school seems to have a different opinion as to what is actually wrong with him. So annoying and completely does your head in! Not to mention the fact that none of them are actually allowed to tell me wether they think he is autistic or not, they probably think that they are helping but it is making the situation far worse.
What is CAMHS?

CAMHS is Child and Adolescent Mental Health Service. They go by different names e.g. Child and Family services etc. Basically, they are usually the local pyschology/psychiatric team who will do the ADOS test and diagnose autism with input from SALT/OT/Paediatrician.

They're generalists and their degree of expertise varies from area to area.

Who formally diagnosed your child? You could go back to them to discuss this further.

People get frustrated with a lack of diagnosis and a 'wait and see' approach with very young children but, unless it's an obvious case of classic autism, it's not always clear until a child matures. Especially when those diagnosing are not specialists (and they rarely are).

Just my opinion.

Do you have any regular reviews with the Paed who originally gave your DS's diagnosis, if so, you could maybe explain your concerns to them.
DD had a diagnosis last month and we go back to see the Paed in six months time for a progress review.

4 is still very young age and I guess anything is possible. I have been reading a book by Bryna Siegel ( a professor of Psychiatry who has worked with children with autism for 25 years) called Helping Children with Autism Learn. She does say that a tiny percentage of children diagnosed with ASD do meet "normalization" criteria by 2nd or 3rd grade (think this might be ages 6-7? in UK).

I don't want to build your hopes up or mislead you but I thought this was a fascinating fact although thinking about things this info is probably no help to your dilemma at all.

Hi there,

Reading Stanley Greenspan may help you regain your confidence. He is a leading authority on child development but disagrees with the modern majority view and believes that ASD is often misdiagnosed because it is a key to accessing services. He takes a very family-centred approach. His website contains an article on the misdiagnosis of autistic spectrum disorders which helped my husband and me see why it wasn't the right label for our son, even as it also helped us see the profound and fascinating patterns that he has that are the same as those of kids with ASD. Greenspan apparently also appears in a full-length film called "autistic-like, Graham's story" which is a (small!) backlash against the major change in diagnostic criteria that has seen more kids diagnosed in the USA.

No-one debates the existence of autism but the decision as to where we place the borderline between " normal" and "having ASD" is an entirely cultural phenomenon. The border may have moved in one direction or the other within the next decade.

I wouldn't dismiss visual timetables. There is an excellent book that explains why they are useful for practically everyone - Visual Strategies for Improving Communication
by Linda Hodgson They are apparently generally misused or poorly used in schools.

Thomas Sowell (author of The Einstein Syndrome) appears regularly on a forum called "Natural Late Talkers" which is full of parents who believe their kids have been misdiagnosed with autism. I thought it would be perfect for me because I have declined to enter the diagnostic process for my own son. But in fact I have very mixed feelings about it - the parents seem so scared of autism that they don't seem to discuss all the great research done by and with people with autism even though the technqiues and strategies arising out of that research can help other children who are on the "not-autistic" side of wherever we choose to place that borderline. They don't seem to want to engage with people with autism or their parents which seems daft to me. I find this forum better for meeting people who are prepared to see my son as an individual and it helps me distinguish the bits of his character that are ASD-ish from those that aren't.

Anyway, here's hoping one or other of these resources will help you regain your confidence. Maybe your son needs the label removing but probably he just needs to be treated as himself, not as an "autistic child". I'm sure you'll find good teachers along the way who also want to see him that way too, and I bet all the professionals would love to as well only they are too overworked and their caseloads are too high!

Hi Larissa
ASD can be a subjective dx - tests don't always give the correct result as ASD is not a one-size-fits-all condition.

Your child was dx's very early on which could also point to a mis-dx as they have developed.

You are legally entitled to a 2nd opinion - a 'fresh' assessment by someone who has not seen your child before or read their case notes.

If the case appears to be 'difficult' then, as debs said above there are very specialist teriary centres you can go to.

What difficulties does he have at school? They must be significant if school are suggesting statementing.
The cynic in me says wait til the statement is in place before looking to have his dx removed.

Thanks for replying everyone.
The paed that dx'd him nearly 2 years ago has seen hime once since then, he has been known to withdraw an asd dx when it is no longer needed. He has seen ds once since then with a room full of people that neither myself or ds knew (intimidating for me let alone a 3 year old). I did explain my concerns and went through the difficulties that I felt that he had which ticked most boxes for oral dyspraxia. He then said that many children have a combination of symptoms and can be a mixture of developmental disorders. Think the dx may have been given in order to access services for him? I also find it unbelivable that the paed only sees him once a year as so much happens in a childs deveopment during this time.
His OT said that his presenting problems were not asd that they were SPD/dyspraxia, his old salt said his dx would change, the early years autism teacher said they had made a big mistake.
My gut feeling is that he has some kind of learning difficulty otherwise as nikos said the school would not be pushing for a statement. He is lagging behind with things like pen holding and colouring although he is making progress just not at the same level as kids in his class. Being an August child doesn't help either.
Will ask for a referall to a specialist as soon as I can. At least then I wil know one way or the other.
Linglette - Do you know if the book on Amazon called The Child with Special Needs: Encouraging Intellectual and Emotional Growth (Merloyd Lawrence Book) is woth reading?

We were DISCHARGED by the paed after dx. I couldn't believe that one. After that you are left to fight your own battles to get the help you need. And the paed never observed him at home or at school.

I do empathise with your position. Ds got an ASD dx when just short of 3. But he has no repetitive behaviours and is not upset by change of routine. And he is now coping very well with reception with support. He is 5 now and has matured and changed so much that it is hard to think he has autism. But he does have something and the autism label has brought us so much help. And maybe it is autism but in a mild form.

But many of the things we are accessing for autism are good for all children with difficulties (play therapy, constant interaction from us at home).

I think having the autism label will make statementing easier so that's all I would caution at the minute.

Do youknow if there is anywhere a list of the traits that SLI and autistic children share?

I've heard good things about ICAN assessments in sifting out ASD from other issues. Of course ABA (ASD) therapy has a philosophy that some children with the right early intervention will move off the spectrum. Anecdotally I've heard of children talking late / being ASD-ish but making progress with speech between 4-6 and "losing" many of their ASD symptoms. My Local Authority put great store by this, applying a lets do nothing as he may improve with natural development approach (sadly in my DS's case this won't be enough). I've learnt to just trust my instinct with DS - you are the only expert on your child, these people just see short snapshots. It may well have been his lack of speech which affected his play skills. Just concentrate on the problems which are there rather than the label. If you feel it would help to "lose" the label as you feel he is being treated in a certain way then you could pursue it - or you could just take it up with the teachers who have these different expectations and explain your concerns about the ASD label. They should be treating him as an individual and dealing with the child in front of them. If he is even vaguely on the spectrum you might run into problems later on when social relationships get more complicated and ASD may come back on the radar. I think the best way to know would be to invite friends home and watch him at play, go into school and "help out" if the school encourage parents to do that and don't rely too much on the school but form your own opinion. In a class of 30 the teacher can never really "know" your child and many children are totally different at school than at home. Also the range of normal in a typical reception classroom is huge and many of the summer born boys do seem quite behind and immature at 4. Can't you ask the school why they want a statement? Go and observe? Going into a reception class regularly is such an eye opener, you would get a good feel as to whether your child is very different, or actually just a variation of normal. You will probably be reassured as to how wide the variation is.

If you haven't looked at the Dyspraxia Foundation list of symptoms it might be helpful:www.dyspraxiafoundation.org.uk/services/gu_symptoms.php
IMO so much of this is what most people attribute to autism
FYIW I am firmly in the camp of early intervention regardless of diagnosis, and also that there is a very fine line between SLI and autism.
Troublewih talk - v. interesting article about genetics though I couldn't get the 2nd link?

Larissa,

The Child with Special Needs: Encouraging Intellectual and Emotional Growth is a superb book and I highly recommend it but he's a better doctor than he is a writer,so the prose can be quite dense. I only attempt it after a full night's sleep!

I think that what we call SLI and some of the types of things we call autism are probably biologically identical. There's a language-led type of autism you hear about on here that seems to differ from SLI only by degree.

I think the best thing is to hold on to his dx for time being and make sure that he is treated purely for his individual difficulties rather then the label.Especially while the statementing process is going on.
It helps so much to hear from people with similar sounding problems as I really feel as though I am on my own at times. After reading other posts about people who have so much difficulty getting the help they need then it is better to have the dx in place then have to fight for the help he needs.
Who knows what will happen in the future as he matures - I just hope that he is getting the right help and that I am not missing anything with regards to the speech therapy. Maybe I should look at getting him a private therapist? At the moment he has a termly visit at school who then sets a program for his teacher. Am really unsure if this is enough for him.

troublewithtalk, have you seen my (lingle)'s discussions with moondog about visual aids to assist children orient themselves in time? It's very ABA-type stuff. Consistent Calendar +doctored clock(whoo-hoo, my invention!) +timetimer (www.timetimer.com) have resulted in DS2 (4.4) probably having a better sense of time than many of his NT peers.

Moondog is an ABA SALT (if you can say that!).

Hi T!

so you know who moondog is then......

I took the front off my kitchen clock (apparently an IKEA one for £1 is ideal fodder for this)and drew three radii on the clock-face. I coloured in the resulting segments choosing yellow for 7.30 to 12, green for 12 till 6 and blue for 6 till 7.30. I removed the second hand. Ideally, you'd remove the minute hand too (not sure if mechanism would still work?) but I made do by telling DS2 that the big hand "was just a silly hand" and that we "look at the little hand". I then simply referred constantly to the different colours as morning, afternoon and evening (language that everyone around him was using anyway).

He was using it and relying on it very very quickly - people are always talking about morning afternoon and evening. He quickly started running into the kitchen to get verification as to whether things were happening at the "right" time.

I only use it downstairs because the whole thing kind of relies on them being upstairs (if not in bed!) by 7.30pm and not up until about 7.30am. Having said that, you could of course draw an extra circle around the outside of the clock coloured in very dark.....and explain it was nighttime....ideally with an extendable hand (you can see a commercial version of this product can't you?)

For some kids I think you'd hide the numbers at first. They have no logical meaning and are very confusing I think. You'd then draw them back on faintly once the child had a secure idea of what the clock was really for.

It's just logic really as per all the things moondog says. We mess around teaching children to recite "quarter past 3" and things like that which they don't need at all at age 4 but we don't teach them the fundementals of what a clock should be doing for us - it's a bit like trying to reduce a clock back down to a sundial-type thing.

Anway, it's been a rip-roaring success for us as DS2 can now tell the time to the nearest hour far better than DS1 can. Ds1 is now 7, excelling at school but still totally confused by all the different language that is used and over-used about time-telling.

I was so proud of myself I almost applied for a patent!

lots of love to you and M, lingle.