my 2 year old, is losing his ability to speek

[Carmel66]

Help, I went to my doctor who said it isnt autism as he makes eye contact, but everywhere I have read when a toddler losses the ability to speak it is a sign of autism. He is 2 years old and I am waiting for a hearing test for him.  I really need help on knowing who I need him to be referred to.
This below of his behaviour may also help:

Violently shakes head from left to right usually once or twice a day
Always from a baby tugs at ears and when a cold there sore
Pulls his own hair
As a baby used to walk on tippy toes all the time
Now runs everywhere when possible
Cant speak anymore- all eegh eagh thutch layla sounds
Lost his vocabularily where he used to be clear and say many words
If he wants mummy or nanny he just shouts tharrrge
Smacks his face (as if washing it) with both hands
Always saying ssssh (holding ears and listening as can hear all surrounding sounds)
Growls (?)
Intentionally smacks his head on wall (occaisionally)
Sometimes hits himself
Has no sence of danger (has to touch things if you say there hot)
He throws himself around
Sometimes its as if he gets very confused and just sits puzzled
Because he cannot talk to express himself or needs, he becomes very frustrated
He does try to talk but can only say yes or no to interact with people
Very poor appetitte
Poor attention span
Very strong willed at times and struggle to get him indoors

Other areas seems advance then the others his age:-
Good at imaginative play
Understands everything you say and ask of him
Interacts with people very well
Makes eye contact and shares all toys
Very aware of all his surroundings, sky, birds, ceiling lights, fans etc..

Used to say:

Og (for yoghurt)
I didn’t
Nanny did
Nanny
Mummy
Nan nan
Eat
Juice
All gone
Over There
Ta
Nanny’s Car
Up
Peek a boo
Incy (for incy wincy spider)
Nana (for banana)

Can Say

Hiya
No
Yeah
Ca (for Ta) (used to say Ta)
Mum mum
Lerilerios (cheerios)
There
Oh No
Two two two

Who do I need the doctor to ask for me to refer him too?  I have no idea what to do its been a few weeks since the doctors and its worrying me sick not knowing for sure whats wrong and getting him the help he needs.
Any advice or help I would be so greatful for.

[Sally44]

Found the poem.  Hope it helps a little.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a
disability - to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It's like
this......

When you're going to have a baby, it's like planning a fabulous vacation
trip - to Italy. You buy a bunch of guide books and make your wonderful
plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may
learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your
bags and off you go. Several hours later, the plane lands. The stewardess
comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm
supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and
there you must stay.

The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease. It's just
a different place.

So you must go out and buy new guide books. And you must learn a whole new
language. And you will meet a whole new group of people you would never have
met.

It's just a different place. It's slower-paced than Italy, less flashy than
Italy. But after you've been there for a while and you catch your breath,
you look around.... and you begin to notice that Holland has
windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all
bragging about what a wonderful time they had there. And for the rest of
your life, you will say "Yes, that's where I was supposed to go. That's what
I had planned."

And the pain of that will never, ever, ever, ever go away... because the
loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special, the very lovely
things ... about Holland.


Still makes me cry everytime I read it.
But the truth is you do expect to be on a certain path, and then it is suddenly changed.  And there is no way of going back.  And that takes time to come to terms with.  But your new experiences and expectations will come and will be just as great.  Maybe even greater, because every achievement will be so precious and not taken for granted.
Throughout the whole process your child remains the same child they always were.  The only thing that all these observations and assessments and therapies do is make you your change your original expectations and assumptions.  

[Sally44]

This is a very confusing time emotionally isn't it.
Part of you is relieved to finally have people confirm your suspicions and worries.  But obviously the realisation that things are not as you expected and that your child is different takes a while to come to terms with.
Someone posted a poem to me about a year ago, and I found it very useful.  Because it did sum up how I felt at the time.  I will try to find it for you.
You are going to be on a bit of a rollercoaster of emotions for quite some time.  So just allow yourself and your partner to both be happy and also to grieve for the child you thought you had.  And you will have days when you are very happy and excited (because he will develope and do new things, and professionals will become involved etc), and you will also have days when nothing seems to go right and you will really worry about what the future holds.  This is all normal.  But if either you or your partner do feel that you are suffering from depression either now, or in the future, then please do seek help and advice from your GP.  
And things do get better with time.

[Carmel66]

He has had his appointment with SALT who have said yes he needs speech therapy so he is now on another waiting list for speech therapy, (I think this is a way of keeping the NHS figures down).
PRESENS (for pre school children) came out to see us, they beleive my son is autistic, they were so kind and gave some good ideas to try with him. However they did not mention about him going to a specialist nursery?  They said they will be taking him on when he is 2 and a half. Seaview will be contacted again in Brighton as they work along side of them for getting him a statement. It was sad but also like a relief that they beleive what we do about his condition, they played with him at home and saw how he is. I guess that is where we have to now contact the Parents Partnership now which is AMAZE for this area. He is still waiting to be statemented or at least the start of this in June this year. So fingers crossed. He is getting worse and was told to bring a blanket when out so he can hide under it if he has had enough.

[kimmy26]

ok, I see you are in the UK.. I'm so glad that you are making progress with this! good luck!

[kimmy26]

Your son sounds exactly like my son did at that age! My son is 3 years 4 months and was diagnosed with autism in April 08

A lot of the things you wrote he still does...

Are you in canada?

If you are, get in tough with family and childrens services developmental area... also, get a second opinion from another doctor, or really push your own doctor... A doctor cannot refuse to refer you to a specialist if you ask...

Get him onto wait lists for speech asap, as well as behavioural and occupational therapies as the wait lists are long

good luck and message me if you want to chat

[Sally44]

Get a note book and write down everything he says and does that you are concerned about.  This will help you be able to give real up to date examples of things he is saying and doing.  Also write down what he used to be able to say and do (whilst it is fresh in your mind).
Speech Therapists should assess for speech and social interaction/play skills.

[Carmel66]

Hi Everyone

My son has come back as excellent hearing, which I knew would happen. We are in Brighton (England UK) and the doctor and Health Visitor wrote off to Seaview that assess children with autism and other disabilities at the Brighton Hospital. I phoned them as he is slowly getting more withdrawn when trying to take him to parks or play. They told me his appointment will be in mid June with PRESENS, so I really hope that that is the right department to assess him for autism?  I know its pre educational needs so not sure whats happening there?
His Speech Therapy is next month to assess if he needs speech therapy then he goes on another waiting list. Oh the great NHS.

Kind regards

Carmel Xx

[Eldermom]

My son is now 30 years old  and he lost his ability to speak when he was 18 months old and later recovered his words.
I urge you to remove dairy products from your son's diet including anything with casein in the ingredients. When all dairy products are removed , it will take 3 to 6 months for the words to return.If you doubt that dairy is the cause once words are back , start feeding him dairy and within 4 days his words will be garbled and after a week words will again be lost. once dairy is removed again , it will take 3-6 months to return the words. As crazy as it sounds I and other parents have tried this just to prove it to ourselves. I did this to prove it to a speech therapist.  I also urge you to go further and utilize the gluten free /casein  free diet. Understand what gluteomorphine and casiomorphine do to the brain.You have nothing to lose.

[Jaylor24]

my son was diagnosed pdd-nos at about the age of 2 1/2 to help you better with that if you are not familiar with it...do a seach on it.  Your son really needs to be diagnosed before anyone can really start giving you advice...until i got a  dianosis on him all the reading I did on ASD other things only made it worse for me. Once I received a diagnosis I was able to focus strictly on what would help him rather then what it could be or what could help.  If I waited for the pediatrician I would also have not have been able to get him help so early and alot of peds chalk it up to he's a boy and hes only 2 1/2 give it time.  my son has made trememdous progess since then  and is doing great, he gets all is services and is in full day pre schoo (special ed). You need to take him to a pediatric neurologist or a developmental and behavoiral pediatrician...they are the ones who can clinically give him a diagnosis.  best of luck  

[spectrumlady]

The Autism Spectrum is called that for a very good reason a HUGE variation is levels or shall I say behaviors of ASD. the comment of being "very aware of environment such as the fan " is a red flad to me as I suspect it isn't the fan your child is noting as much as the movement of the fan is this possible?

Yes indeed get another opinion and also note not all ped nero are ASD experts ... Find someone who specializes in ASD also you may want to look at the autism research web site and do some reading. Has the decline in lang been fast or slow? Did you child have an illness recently or vaccination?  I realize some don't believe there is a correlation but there does seem to be a connection with immune issues and our ASD kids..

Good luck and don't settle for one person's subjective opionion. Unfortunately there isn't a blood tet for ASD but there are a lot of very smart people out there who can help you...

This could be other things but I wouldn't rule out ASD just yet.

[Sally44]

I just wanted to add that you being on the case when he is 2 years old is very good.  Many families are fobbed off for years and don't get a diagnosis until their child is well into the school system and failing.  
He will make progress, and he will develop and learn things.
As he appears to have sensory issues, and has also lost language, I would recommend a book called Sensory and Perceptual Differences in Autism and Aspergers by a woman called Olga Bogdashina (she gives seminars around the UK - she is from the Ukraine but does some research for Birmingham University).  This book has a sensory profile questionnaire at the back of it that you can complete to get a sensory profile of your child.  The autism outreach department in our city uses this questionnaire, so I know it is reputable.  Although he is 2, and isn't capable of some of the things in the questionnaire, it would still be useful to see if you can identify behaviours he has and link them back to which sense he is having difficulties with.  
You can also google her name and read an article by her printed in Autism Today.
When you go for the assessments at the centre recommended by the NAS mention about his sensory issues and getting him assessed by an Occupational Therapist (and getting on the NHS waiting list for a community OT - which is about a 2 year wait - don't be put off by the wait, get on the list because it is worth it).
If you can't get access to an OT in the near future, and you feel he has significant sensory needs, then I would consider seeing a private individual for them to assess and put together a programme for you.  That shouldn't be too costsly, as once they have assessed you probably only need to see them again every 3 months for an update.  And at such a young age when their brains are developing is the best time.  If you send me a private message I can give you the contact details of a woman I had dealings with who has alot of experience of children on the autistic spectrum as well as sensory integration issues.

[Sally44]

Hope all goes well.  If you have any further difficulties either with diagnosis, or supports/therapies, or appropriate nurseries etc, get in touch with the NAS again.  Also contact your local Parent Partnership because they can go with you to meetings etc and know the process you are going from start to finish.
I think you would also find it useful to find out about local parent support groups.  There will probably be a number of groups in your area, so see which ones fit you best.  Some are meeting places just for parents, others are social gatherings for parents and children.  You will get alot of help and support from these groups because it is full of other families who have already gone through the process that you are now starting.

[Carmel66]

Hi All,

Thank you for your support and help, I took your advice, first I telephoned The National Autistic Society and they let me talk through my sons symptoms and gave me addresses of help near home and to go to the doctor and ask to be referred to them for assessment. I was so pleased as he read the list we had typed out and agreed, he will be seeing an autistic expert for his assessment. Also the letter came for his hearing test today which will be in a months time. I do think his hearing is fine and if anything sensitive.

I will keep you updated

Sending healing hugs to all

Carmel X

[ddaniell]

Please take your baby to a pediatric neurologist.  My autistic son is 20 and he has always hugged people and interacted with people (on his own terms).  My son bangs his head when he is frustrated.  Seems your son may have so sensativity to sound.  You may want to get him so ear plugs or something similar to reduce the sound for him, until you can have him seen.  Especially if you have a lot of activity going on and a lot of different noises.  See how he does when the room is quiet.  If he seems content but then when you turn on the TV or someone talks loudly or yells.....he freaks out......it would definately be a big sign that he is super sensative to sound.  Autistic people have our senses X10, which means a TV is 10 times louder to them, hot is 10 times hotter to them.  My son will only eat or touch anything that is room temperature.

Good luck.

[Sally44]

One other thing I didn't mention is dyspraxia of speech.  This is due to difficulties with muscle control in the mouth area.  It can be accompanied by other motor movement difficulties or can just affect the ability to speak.  However I am not sure if that has to be there from birth, or whether it can appear in infancy.  Again, the speech therapist should pick up on that if it is a problem and she, along with an Occupational Therapist, would be working on that type of difficulty.
If you go onto the NASbsite, you can phone the helplines to get information about getting a diagnosis, or finding a centre near to you that you would go to as a private patient.  I am from the UK, and it took about 4 months for a referal to an speech therapist.  After about a month she referred my son to a communication clinic (which specialises in diagnosing autistic spectrum disorders), and this was through our local childrens hospital.  After a waiting time of approx 6 months he saw a clinical paediatrician, clinical psychologist and was also seen by an educational psychologist in school.  The speech therapist told me after her intial assessments to expect a diagnosis of an autistic spectrum disorder as his speech and play skills fell into that area.  It took a further 18 months to get a formal diagnosis from the hospital.  So it is a long time, and you need to take the slow steady plod approach, because, if he does get a diagnosis that isn't the end of it, it is the beginning because then you have to start looking at nursery/school places etc.  Always make sure you put any requests into writing and always get written replies and not verbal information.
In the UK all enhanced resource (mainstream with extra staff and facilities) and special schools need a pupil to have a Statement to get one of those special needs places.  I don't know if it is the same process at nursery age.  The statementing process is something to look into in the future as it is a legal document, and it should contain all your childs needs and how they will be met in an educational setting.  When you get to that stage I would recommend talking to the National Autistic Society as they have an educational helpline.  Get a copy of the SEN Code of Prace for the Statementing process.  Also get in touch with your local LEAs Parent Partnership now, as they can help support you through the processes you are going through.  You are a long way off from getting a Statement at this point.  But when you are at that point make sure you go to a Parent Partnership seminar about the statementing process and a NAS seminar about the same thing.  The code of practice says that the Statement should "quantify and specify in terms of hours of support and staffing arranagements."  The LEA will try to make a statement that does not contain that specific information.  If your child's Statement says "he needs Speech and Language therapy from a therapist on a weekly basis, practised by a TA throughout the week" etc etc, then because it is a legal document the LEA have to provide that.  If it says "XXX will have access to a Speech Therapist as necessary" - that is something totally different because there is no way you can measure or challenge what they are doing because it does not 'specify' the hours or who will do it or how often.  Does that make sense?
So, print off this advice, and read it again when you get to that stage.
Your parent partnership will be able to tell you the levels of support your child will go through at nursery (whilst you are also in the process of having assessments and referals done).  As he is 2 now, I am not sure what the process is for Early Years, but they will know.  I would also talk to them about any criteria there is for your child to go to an enhanced or special nursery.  He is showing alot of frustration now, ie. hitting himself etc probably at not being able to communicate.  He may well struggle at a mainstream nursery because the 'staff to children ratio' will be too high and the staff will not have experience or expertise with children with these types of difficulties.
At any stage you can get private reports completed on your child.  They are always more thorough because LEA/NHS staff are always assessing with the knowledge of the level of service they provide.  Unfortunately everything runs on budgets.  If you are not happy you can again get advice from the NAS, and their information service (formerly known as PARIS) has lots of info on it including assess to private professionals and solicitors who specialise in educational law.  
After not being happy with the support my son received at his previous school, and not being happy with the input from professionals eg. Autism Outreach Teacher, Educational Psychologist, waiting 2 years to see an Occupational Therapist and finally being denied a place at a local Enhanced Resource school; I got private SALT/EP/OT reports, and went to an Educational Tribunal with a solicitor.  I got everything I had asked for because I had 'evidence' through the reports that he needed it.  I know that the NAS now has a Tribunal Service where they give advice, and I think they can also represent you at tribunal - but you'd need to check that.
If you do go the private route, a good report will cost around £1500 per professional.  You need to find independent professionals who have experience of autistic spectrum disorders and they must not work for the LEA or the NHS and they should have experience of being expert witnesses at Educational Tribunals.  They will tell you what your child's needs are and will make recommendations as to how those needs should be met in nursery/school.  This is your evidence that you can use towards a Statement.  If you have evidence of your child 'needs', then the LEA/NHS have to provide it.  If they don't currently have that level of provision they have to buy it in, but only if your child has a Statement.  

Do you suspect your child has any sensory issues.  Do their appear deaf, cover their ears, make lots of noise, react as if slight touch hurts them, or they don't appear to feel pain, are they oversensitive to smells and taste.  What is his balance and co-ordination like?

[Carmel66]

Thank you so much for your advice and help I will follow it up, and keep you informed. I really appriciate your time on this matter for myself and my son.
Thank you

Kind regards

Carmel

[888mom]

Losing the ability to speak is a sign of regressive autism.  If you are getting advice and a diagnosis from the regular pediatrician, a regular pediatrician is not trained to diagnose autism.  You need a specialist.  You also need to find out if your son needs to get in to some sort of therapy.  If you are in the U.S. this would be Birth to 3. A specialist may require a wait list of anywhere from a month to 5 or 6 months.  A specialist could be a developmental pediatrician or a pediatric neurologist.  Find out what your insurance covers and get an appointment somewhere today.  Sometimes you can luck out and get in on a canceled spot.

It must be difficult to go through what you are going through.  From what I've read regressive autism seems harder to deal with than other forms.  My daughter never talked and had "sensory" issues from birth and had OCD (rituatlistic type) traits from a very early age as well.  um, you could read about Doug Flutie (former football player) and his son who had that type of autism.  His son had it pretty severely though and that may scare you to read about him when other kids with regressive types of autism fare a lot better for picking up verbal skills again.  

It may also not be autism.  I get very confused.  I met a lady through a friend of a friend.  Her son was diagnosed with apraxia and was told that he does not have autism even by a specialist.  He used to speak words starting at age 1 and he over the course of a few months lost all his verbal skills and developed behavioral issues.  He's now speaking again with lots of therapy (she also has done some diet changes with doctor's advice and followup).  

You may want to find some support groups for yourself as a mom.  Friends.  Family.  Internet support groups or even support groups in the community that have meetings.  Even if he doesn't have autism (sounds like it from my non-professional opinion though), I'm sure an autism support group would welcome you and be able to offer advice.

[Sally44]

Losing the ability to speak is a sign of autism, but it could be other things too.  Being able to make eye contact does not rule out autism as some children/adults can do this.  Where is your doctor referring you to?  You say he is sending your son for a hearing test.  That will rule out hearing loss.  If that is okay you need a referal to a Speech and Language Therapist who should assess his expressive and receptive language, auditory memory, working memory, and should look at the possibility of Central Auditory Processing Disorder.  If he has regressed she should begin to teach you some symbols that you will work with with your son so that he can use the symbols to communicate.
If the doctor doesn't think he has autism, I would personally want evidence of that ie. referal to a neurologist who can make sure there is nothing else medical going on through an MRI scan or similar, and referal to a multi disciplinary team who have experience of diagnosing autistic spectrum disorders.
In the meantime it can be useful for you to write down everything he does that concerns you as well as the things he is good at.  You can also contact the national autistic society in the UK on www. nas.org and get lots of advice and information from them.