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If he's not autistic then what is he...? (bit long, sorry)

(11 Posts)
LittleBonnie Wed 19-Feb-14 22:18:44

My Ds (7) has had development and language problems noticeable from a very young age. Due to our concerns with his language and the fact that we have a family history of autism, he was monitored by a paediatrician from quite a young age and the formal assessment for autism diagnosis was started when he was 5.
However, since around the age of 5, he has developed really well, much better than anyone expected. The language has dramatically improved, along with his behaviour, and academically he is only about a year behind the class average for his age. His paediatrician, speech therapist and one of his teachers have all told me that he does not bear the trademarks of autism, ie. he is affectionate, imaginative, shows emotion and humour. He changed paediatricians around age 6 and the new paediatrician, who had not seen him when he was presenting with major concerns, immediately dismissed any need for further assessment and at the time we were very happy with this as we didn't want him 'labelled' unnecessarily.
As parents, although we are truly happy that he has made positive steps in his development, still have some concerns for him. His speech, although he has a good range of words, is often muddled and difficult to understand. He also gets extremely fixed on certain interests to the point of obsession and it is very difficult to sway him off these subjects. He will talk constantly about his favourite subject, even to random strangers. He doesn't have the realisation that other people do not share his interests and he also has no realisation that other people perceive him as weird or strange.
He also appears young and babyish compared to other boys his age, other children talk to him condescendingly, as though he is very 'dim'.
He is a very sociable little boy and would love to have a large group of friends although his social skills are very lacking, largely due to the fact his conversational language skills are very poor and because he struggles to understand what the other children are talking about.
The other main area of concern is his diet which is limited to the extreme, (ie, the same sandwiches for breakfast, lunch and dinner).
I need help as to where to turn next...the paediatrician has said that he is fine and doesn't need a diagnosis and that he definitely won't be diagnosed with autism as he doesn't fit the criteria. The speech therapist has discharged him because she has seen him through the essential basics and there is not enough funding for further help. We have tried going to social groups for children with language problems but the other children there attended special needs schools and their needs were much more severe than my DS so he didn't really fit in there. I want to get him as much help as possible because he is starting to get anxious and depressed the more he struggles with other children socially and the more aware he is of being different to them. Advice please.

Peppapigisnotmyname Thu 20-Feb-14 15:50:07

One thing that struck me about your post is your remark about his interests and that they are like obsessions. What does the paediatrician say about this? Or about his limited diet? How are school? Do you have any support for them?

My DS is 9 and has a dx of ASD, when he was five. I was concerned about much of his behaviour from when he was about 18 months but I was fobbed off. I eventually got a referral to a paediatrician who saw DS twice when he was four and then said he was fine and discharged him - I wanted to hear that as I was happy to stick my head in the sand. When he went into reception, the school couldn't handle him. They got me in and strongly suggested I got a referral for assessment etc which I did and he was then dx with ASD aged 5. Now he has a statement of 20 hrs a week and he's in ms school.

ASD is a massive spectrum. My DS can easily maintain eye contact and is extremely affectionate. He's a very loving boy. He was also seen by speech and language but discharged. He never spots talking now and, with the help we've had it feels like he's been 'unlocked' - sometimes anyway!

Some of the traits you describe sound similar to those displayed by my DS, especially the obsessions, he can talk all day about them. Perhaps speak to school. What about asking for a second opinion? Don't know if that's any help? Whatever you do though, don't give up x

Peppapigisnotmyname Thu 20-Feb-14 15:51:51

Also when DS was about 6, he kept saying things like - 'something in my head makes me do odd things'. He's very perceptive and was aware that he was different to his peers.

adoptmama Fri 28-Feb-14 05:06:04

I would insist on further assessment/referrals to investigate his difficulties. Even if he does not meet the diagnostic criteria for ASD her clearly has problems. If he was assessed for ASD against the new (2013) DSM-V criteria (and some in the UK do use it, it is not just confined to US) then he may not get the ASD diagnosis. For that reason you should ask them to also consider Social (Pragmatic) Communication disorder: www.iidc.indiana.edu/?pageId=368

LittleBonnie Fri 28-Feb-14 16:18:48

Thank you for your replies. I think I'm going to go back to the GP and ask for a re-referral. I've had a bad day today, witnessed an older child mimicking the noises he sometimes makes and the mannerisms. He didn't notice but it upset me so much!

fanjoforthemammaries7850 Fri 28-Feb-14 16:23:16

My DD has autism and shows emotion and is affectionate and has humour.

Levantine Fri 28-Feb-14 16:27:41

Likewise my ds1. Very cuddly, very sociable. He has a dx of asd. That isn't to say your son needs one, but I didn't think he had autism for years because of the eye contact etc. I hope your GP is helpful

Shellywelly1973 Sat 15-Mar-14 14:28:27

My ds has a diagnosis of ASD & ADHD. Local CDC paed said his behaviour was due to his personality.

A year later GOSH diagnosed him...

Go back, get a second opinion.

Keep on til someone listens.

Take care.

CalamityKate Sat 15-Mar-14 15:05:10

My son was diagnosed with AS at about 7.

He's affectionate, makes eye contact and has a great sense of humour. He's also articulate with a huge vocabulary.

However he had speech delay when younger and when he did start to speak it was garbled to the degree that only we could understand him and his .... syntax? .... whatever the word is..... was odd. He used to stress the wrong syllables in words/the wrong words in sentences.

He used to be obsessed with opening and closing doors. Then later on, people's birth dates. Then numbers/letters (useful) then telling the time (also useful). A while back it was planes.

He's in the top sets for most of his subjects at school.

He's still quite immature in a lot of ways although he can come across as pompous and way older than his years.

They're all SO different!

NynaevesSister Wed 19-Mar-14 12:21:13

My son has many of those traits and is diagnosed with Dyspraxia. This affects their social relationships as well as their co ordination and conceptual organisation. All our support has been through the school. He has been assessed and they discovered he had language issues too - these had been masked by his being a chatterbox! But it turns out he is two years behind. The language therapist is drawing up a program to help with that.

incywincyspideragain Tue 25-Mar-14 20:51:27

My ds (8) was highlighted for a CAHMS referral at 6, we followed this up with GP (school advice) and he didn't think ds would get a diagnosis (we agree), School have also had him assessed by SALT (no issues) and Ed Pysc, ADHD and dyspraxia have also been discussed - no one 'label' seems to fit.
I've little idea except to tell you how we are trying to help our ds who is also aware he is different and struggles to form friendships although gets on with his class mates ok.
He started Beavers at 6 - I spoke to the leaders and was prepared to stay with him but they 'cope' fine with him and its a new peer group for him to interact with, weirdly he gets on better with the older children as they tend to guide him and have more patience. He also plays an instrument and does sport (lone activity like swimming but something he can be good at) to build his self esteme.
Can your ds hear properly? ours had chronic glue ear which I think was, if not the cause, certainly exassabating the social and communication difficulties.
We've also overhauled his diet, by removing wheat and dairy he's expanded his range of foods he'll eat - not sure why the wheat and dairy would affect his food choices but we have intollerances (not allergies) in the family so it made sense he could be sensitive to foods and it would change his mood.
I'd go back to the GP and ask for a second opinion if you have concerns
Do you have any support at School? IEP in place? extra support groups? ds does forest school and SULP (social use of language programme) and a lego club (not all at the same time!) to help develop his social skills which has also helped the other children understand him

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