Wrong diagnosis of autism

[davidjoemum]

Hi I have posted recently about my son being diagnosed with autism.but it was just one appointment and consultant diagnosed him with "most likely ASD" ( her words) only after what I have told her and my son being 30 minutes with her in the same room.he is talking only some single simple words he repeats me a lot he occasionally point he can recognise and name pictures in his books.he understands me, he's not always reacting to his name when called, he using spoon fork feed himself he's hearing is fine we had tests last week he is happy boy like going places in public( hates boots and superdrug tho) he like playo g with kids he adores his sister(she's one year younger)he chats and babbles in his own language a lot.
Doctor were seen ( this one who diagnosed) said that he's having poor eye contact howrver he's got prefect eye contact with us at home.
Should I seek second opinion?i have snooped on here recently and I know that some of mums here had diagnosis after hv visits and observatons.i never had health visitor at home regarding this issue(she was visiting when David's sister was little and he was one year at that time.
Please share experience with me I beg you for advice I don't have person I can turn to ATM and my oh is an ass ATM
My son is 30 months old
Thanx for reading

 

[roxie78]

I can't see how they can diagnose after 1 appointment. My son had weeks of appointments with many different professionals until they diagnosed and provided us with a 30 something page document with their findings. Sorry gotta read and run really now but will try and post more tomorrow x

 

[davidjoemum]

I can't see how they can diagnose after 1 appointment. My son had weeks of appointments with many different professionals until they diagnosed and provided us with a 30 something page document with their findings. Sorry gotta read and run really now but will try and post more tomorrow x

Thank you for your reply

 

[SingleStudent]

Hello,
My son was 4 when the school noticed he was having some problems with his speech and recommended speech therapy (we put this down to him being unilaterally deaf previously). My son is privately educated and they already had an external therapist that they worked with so instead of waiting for the NHS we asked her to do an assessment on him. We spoke on the phone for over an hour about my son about the worries I had and she spoke to my son's teacher about her worries. She then spent two afternoons observing my LO in class and then spent some one-on-one time with him.

After receiving the report (it was loooong) she had stated that he was showing autistic traits but thought it was more high functioning aspergers. Any way to cut a long story short it turns out he is actually autistic (not aspergers). We've never had him officially diagnosed because he has the support of his school and the therapist and an official diagnoses wouldn't be of benefit to him because he is privately educated. There is a fantastic book by a guy called Joshua Muggleton called Raising Martians and it is fantastic. I'd recommend it as it has certainly helped us to understand things more.
Unfortunately I cannot advise on the process of the NHS when dealing with autism but please try not to view any diagnoses as a negative because it really isn't.

I know how daunting everything can be but have you looked into seeing someone privately? You have far more scope when your paying to get real answers and discuss things properly.

 

[Creative]

My son was 7 when he finally got some diagnosis. we'd been persuing it since he was 18 months old. It finally felt amazing to have an answer.
These things do take time. There is so much to investigate and explore and better that then giving an incorrect diagnosis.
Try to be patient. You are in the system. keep observational records etc and wait patiently.

 

[mummy2o]

My sons paediatrician knew my son had autism the first time he saw him. It wasn't the official diagnoses but he was very experienced and retired a few years later, after he was diagnosed. We then waited until he got a place at the assessment nursery and they team there observed him for 6 weeks for 3 half days each week. We go in and talked about family background etc. I would suggest against going privately as its harder to get a school statement when the time comes as its not NHS. Very stupid system we live in, unless your going to send your child to a private school then again the system is different.

Every child and adult with ASD show different signs. Some are huggers, some hate physical contact. Some find it hard to give eye contact, but others are fine (your son is also more likely to give you eye contact), the amount of words he knows with you maybe be different with a stranger. Just like everybody is different there is no black and white. I would get a second opinion if it puts your mind at ease, and probably get further testing in case he needs help in school.

 

[Ninagrrl]

My son has not been officially diagnosed as being autistic but I still believe he is somewhere on the spectrum. He is fairly high functioning and is very affectionate and social which is why at 18 months they told us they didn't think he was autistic even though they admitted he did have a lot of autistic features. He also doesn't have as many meltdowns as what someone would normally think as being autistic. They do happen, just not often. It could be likely that your son is somewhere on the spectrum but not the clear cut classic understanding that most people have of what autism is. It's a spectrum disorder which means that people can present with many different symptoms and no two cases are alike.

My son is completely unaware of what another person can go through. He can't see or imagine anything from any other perspective other than his own. Example, he only understands pain from his experience and doesn't understand that other people can hurt, too.

He does have personal space issues but is fine as long as he comes to you with it. If he is approached he can be standoffish and even hit or kick. Everything is done on his terms. It took me a lot of work to break down this wall and up until 2 years, the only way I could hug my child is if he was back to me. At 3 years I was finally able to kiss my son.

When something bad happens to my son, the whole activity is then off limits, not just whatever caused the problem. Example: he got bad diaper rash after a flu once and then threw a fit kicking and screaming for any diaper change for over a month.

Has been diagnosed with a sensory disorder, has problems with loud sounds, is very distracted by both noise and light, has texture issues with his food even with chocolate that he loves (won't eat pudding), has temperature issues with both hot and cold but is extremely sensitive to heat.

There is more, but my point is that we were told that our son isn't autistic at 18 months old simply because he is social. I KNOW this isn't true in all cases. I know 2 different high functioning adults with aspergers and both make eye contact and even desire to be a very social people with lots of friends and romantic relationships, but at the same time they both have issues with picking up on social cues and understanding what is appropriate and what isn't.

My son is turning 4 in December and at the recommendation of his habilitative interventionist, the local children's services department and his pediatrician he is going to be evaluated again for autism. I actually got the call yesterday from the specialists and they are sending a packet I have to fill out and send back before I can get my appt.

I think that a proper evaluation is done over a series of different specialists that play with and observe alone play with the child. It takes a team of people over several sessions to get the right diagnosis for where on the spectrum your child is.

 

[SingleStudent]

I totally agree with the post which states that if you child will be state educated then the NHS is the best place for him as he will have a statement of educational needs to go to school with him. This is a legal document and the school have to make adjustments that are recommended in the statement and extra help will be put in place.

However if you are looking into the private education route (which is proven to be hugely beneficial to autistic children) then a statement of educational needs is worthless and you'll probably find it difficult to find a good prep school who will accept a child with an 'official' diagnoses of autism because they do not have to accept anyone.

I don't know your circumstances so was only offering an alternative opinion from what I have experienced in the private sector.

 

[smileyfaces]

Are you sure it was an official diagnosis? X

 

[AP]

Did you have anything before hand?

Alex was diagnosed after one appointment (generally takes a few) but this all went hand in hand with the years of paeditrician reports and tests, speech therapy, and occupational/physio therapy

 

[davidjoemum]

Did you have anything before hand?

Alex was diagnosed after one appointment (generally takes a few) but this all went hand in hand with the years of paeditrician reports and tests, speech therapy, and occupational/physio therapy

No I went to see my GP and spoken about my concerns and she referred me to see consultant and she confirm my worries.my son is happy boy gives eye contact pretends play,the only thing he doesn't do is talking and not point he babbles a lot and know whole abc he recognises random letters and name them also he can count to 20! ( he knows loats of words and repeat everything we say to him he understands us and he follows simple direction) we got letter with report ect so is official.we did sent him to the nursery and it starts on Wednesday! Still waiting for letters from speech and language therapist!

To add we are bilingual I speak polish to my kids oh speaks English.we have daughter who is 1,5 now and she's not talking except bablling I know is early for her but I think that makes them both even more confused! Got to the point where I don't want to talk polish to them anymore.

More to add but important he knows his name but rarely responds to it.

 

[AP]

Perhaps it might be worth asking for a re-evaluation?
Could it be the speech delay is an effect of a bilingual household?
In terms of eye contact etc not all ASD children have lack of eye contact, communication etc - there's loads of different things.

I think you do need an explanation of why he was diagnosed and what makes them so sure. This isn't just about him but the whole family and you all need some understanding. I hope someone can help you xxx

 

[StranjeGirl]

Did you have anything before hand?

Alex was diagnosed after one appointment (generally takes a few) but this all went hand in hand with the years of paeditrician reports and tests, speech therapy, and occupational/physio therapy

No I went to see my GP and spoken about my concerns and she referred me to see consultant and she confirm my worries.my son is happy boy gives eye contact pretends play,the only thing he doesn't do is talking and not point he babbles a lot and know whole abc he recognises random letters and name them also he can count to 20! ( he knows loats of words and repeat everything we say to him he understands us and he follows simple direction) we got letter with report ect so is official.we did sent him to the nursery and it starts on Wednesday! Still waiting for letters from speech and language therapist!

To add we are bilingual I speak polish to my kids oh speaks English.we have daughter who is 1,5 now and she's not talking except bablling I know is early for her but I think that makes them both even more confused! Got to the point where I don't want to talk polish to them anymore.

More to add but important he knows his name but rarely responds to it.

I would ask for details. There has to be a social piece to autism. If it is simply his speech then that does not qualify for an autism diagnosis. Yes, autism is a large spectrum, but a child/person still needs to meet certain criteria for it to be labeled autism. They must be impaired in communication as well as socially and have repetitive behaviors (which could develop later- also kinda hard to tell in a toddler.) If you are not seeing any social issues than I would definitely get a second opinion and ask the first dr for a detailed description of WHY he labeled it autism.

 

[sethsmummy]

Ds1 has had health proffesionals involved all his life but still is undergoing a full assessment for autism...no 1 appointment thing. From birth hes had health visitor, paediatric specialist, speech therapist, dietician. Only now that he is almost 4 are we getting somewhere after knowing there was something since he was 1. We were reffered to an eduction visitor who came out and did tell me on the 1st visit she thought it was asd but she cant diagnose...thats just her opinion. Weve now had 10 weeks of visits both at home and nursery where she has assessed him, took notes and filled in a huge list of what he can or cant do. She has to get together with the speech therapist over the school holidays......they will both do one visit each and then compile their reports to be sent away to the official board and it could take upto a year to get the official diagnosis. My son has A LOT of markers for autism and the e.v is defenity in her opinion. So all in all a very long process for us.

 

[AP]

I would ask for details. There has to be a social piece to autism. If it is simply his speech then that does not qualify for an autism diagnosis. Yes, autism is a large spectrum, but a child/person still needs to meet certain criteria for it to be labeled autism. They must be impaired in communication as well as socially and have repetitive behaviors (which could develop later- also kinda hard to tell in a toddler.) If you are not seeing any social issues than I would definitely get a second opinion and ask the first dr for a detailed description of WHY he labeled it autism.

I agree

 

[Tiff]

I agree with getting a 2nd opinion as well. We knew Claire was on the spectrum but it still took almost a year of assessments/tests with occupational therapists, speech/language pathologists, psychologists and then finally the ADOS and MCHAT.

If there hasn't been previous concerns I'd be wanting another evaluation as well. Not to say he might not need a bit of help with everything but I agree 100% that there's more to Autism than just limited speech.

 

[OmarsMum]

which language do you think he finds easier? I'd concentrate on using one language. My cousin is almost 4, he's also raised bilingual. He didnt started to tslk until he was over 3 yrs old. He even stopped babbling as he used to get embarrassed when we couldnt figure out what he was saying. His sister & brother use English most of the time, so it was easier for him than Arabic, he started pre-school last September, his speech really improved as they use only English. Arabic is taught as a second language only in his school. Now he talks in full clear sentences.

His sister was also raised bilingual, she didnt start to talk until they moved to Canada when she was 4, English was easier for her. She's 14 now but she still struggles with Arabic. Her sister who's 2 years younger doesnt have issues & he's brother who's 7 now was an early talker

My cousin's son was also raised bilingual with Dutch as a second language. But he didnt pick up the language although his brother can speak Dutch easily along with English & Arabic. He was able to learn English at school but he couldn't pick up Dutch, he didnt start to talk until he was 3.

My friend's daughter has severe speech delay, she was advised by her speech therapist to use one language only. Raising kids as bilingual is a goodothing, but it can cause speech issues.

As for eye contact, my son was a shy kid, he didnt have a good eye contact, I noticed it when he was 2. I started to encourage him to look at my face when talking, now he has a perfect eye contact, but when he feels shy he doesnt look look directly into the eye. Hubby is a very shy guy, & most of the time he feels it's embarrassing to have direct eye contact with strangers.

A second opinion won't hurt hun, I know how you feel. My son was flagged as autistic through a school assessment because he was still in nappies at the age of 3, he didnt like to social with kids his age, he was advanced for his age, he had obsessions with letters & numbers & he had some sensory issues including food pickiness. My aunt who's a teacher (the one with kids with speech delays) also mentioned it as she works with special needs kids.

Well he was out nappies full time after 1 week from the assessment without potty training him, he lost his obsession with letters & his toys preferences keep changing. Now he is very social & he has more than 10 friends his age, he doesn't have any sensory issues anymore & he loves messy play.

Sorry for the long post, I lived for almost 1.5 yrs in ongoing worries, when I took him to his gp for assessment & advise he laughed at me & asked me to stop worrying.

Big hugs

 

[davidjoemum]

He definetly finds English easier manageable as everybody around talk English only me and my few friend talk Polish.since appointment I haven't been talking polish to him anyway I feel like this make him confused!
Thanx for great advice!