Any sugestions

[Wifey711]

My son Anthony began having "breath holding spells " at 2 months of age . At about 5 months of age they progessed and he would do them 3 to 4 times a day turn completly blue /grey get stiff as a board  legs and arms twiching then go lymp .. after about 20 seconds he would take a huge gasp of air the color would start to come back and then he would sleep for 2 hrs or more . he was hospitalized and had EVERy test done .. no results . Then at 1 year 9 months he had a stomach flu and had a breath holding spell that went into a gend mal sezuire . he was hospitalized again with no out come. I began Early Intervention right away he recieved speech , Ot and special education . he did very well . he also has nuerofribmostosis . he is now 4 years 11 months . he is a smart boy but very repetative .. walks on his toes sometimes .. makes great eye contact is not afraid of noises but its now afraid of animals . Cannot hold a back and forth conversation prefers to talk about what interestes him and repeats it over and over . Can not follow directions well .. seems like if he walks away n starts a new talk he forgets it. he has recently been screaming and throwing things when frustrated , thats all i can think of off the top of my head .. any answers would be greatly apreciated

[Sally44]

The difficulties he has with speech you should mention to his Speech and Language Therapist.  Google echolalia and delayed echolalia and perseverant speech to see if any of those is what he does.  Remember it varies, some one child might do it all the time, whilst another might do it occasionally.
He is now nearly 5 and he isn't able to hold a two way conversation, preferring to talk about his interests and I presume takes no note of whether you are interested in what you are saying or whether you contribute to the conversation.  So he almost delivers a statement and doesn't 'chat' with you?  That shows a lack of awareness of other people and problems with social interaction - because in the same way that his speech is restricted to his own interests and he cannot adapt his conversation or include other people, his play skills will most likely show similar problems.
Google Executive Function Disorder as he isn't able to follow directions well and see if that sounds relevant (that is also probably tied up with his speech - I presume his speech therapist has assessed his receptive speech skills, auditory memory and working memory skills?
Does he need to keep to routines or does he get upset is something he expected doesn't happen or changes?  Is he okay with transitions ie. being told to turn off the TV to go and down something else or does he get upset when told to stop something and insist that he finishes it?
Could the holding his breath be anything to do with transitions ie. when demands are made of him he holds his breath?  My son used to vomit if I asked him to do something that was different to what he was doing at that time.
I am not a professional, I am a parent of a child on the autistic spectrum.  And the things I have mentioned I do see in my own son.  You can google the diagnostic criteria under DSM IV autism and see what the characteristics are.  
At 5 he is going to have difficulties in school with the things he is struggling with.  Is he at nursery now, and how is that going?
I think it would be advisable to go to his paediatrician or your GP and ask for a multi disciplinary team assessment of your child by professionals who have experience of diagnosing autistic spectrum disorders.  If he isn't autistic he won't get a diagnosis.  And it is called the autistic spectrum because it affects every child differently from severe to mild and each child has different 'behaviours' that fit the criteria.
Screaming and throwing tantrums when frustrated and in situations of change or anxiety etc are also common amongst children on the spectrum.

[William H Ahearn, Ph.D., BCBA]

You certainly have a very complex situation and I don't believe that "googling" is going to sufficiently answer your questions and concerns.  The internet is full of useful and, at least as much, useless and counterproductive information.  It is often difficult to determine what type of information you have googled.

It is certainly possible that your son has an autism spectrum disorder and neurofibromatosis, as they sometimes co-occur.  It is critically important to have this condition closely managed, as you are probably already aware. NF1 is the most common form and though there is no known treatment there are good indications that this genetically inherited disease can be managed to reduce the severity of its symptoms.  If your son has NF2 there have been some recent and potentially groundbreaking advances in treatment that can be found at the next link. For professionally screened information on NF start with MedlinePlus at http://www.nlm.nih.gov/medlineplus/neurofibromatosis.html.

If you would like more information about autism, MedlinePlus also has an autism page at  http://www.nlm.nih.gov/medlineplus/autism.html.  A link to an Asperger's Syndrome page can also be accessed there.  I suggest that you seek out a competent developmental evaluation of your son with the expressed purpose of determining whether he has an autism spectrum disorder.  He may be receiving early intervention services now but if he has an autism spectrum disorder, research suggests that ecelctic early intervention services (and any other approach to treating autism) is not as effective as applied behavior analysis (Howard et al., 2005).  The MedlinePlus page can suggest how to seek professional screening and who is qualified to do it.  If your son does have an autism spectrum disorder then I would recommend that you seek a Board Certified Behavior Analyst in your area to assist you in identifying effective behavioral service provision for children with autism in your area.  More information about behavior analysts and a searchable certificant registry can be found at www.bacb.com.

The specific presenting problems you talk about included delayed echolalia, direction following, and communicative difficulties, especially conversational skills.  There are numerous behavior interventions for these areas.  Delayed echolalia is likely best treated by specifically training alternative communication skills and redirecting the child to them when they emit delayed echolalia.  This is not that easy to do and must be tailored to each child's needs. The best person to do this is a BCBA with extensive experience working with children with autism.  They would likely be very familiar with the approach I mentioned. Direction following involves receptive communication and other communicative responses can be taught but a competent behavior analyst would be the best person to lead intervention.  I wish you the best of luck and hope the resources I have led you to will prove to be helpful.


Howard, J., Sparkman, C., Cohen, H., Green, G, & Stanislaw, H. (2005). A
      comparison of intensive behavior analytic and eclectic treatments for young children
      with autism. Research in Developmental Disabilities, 26, 359-383.

[Wifey711]

No he does not hold his breath anymore he out grew that at about 3 . he is not sensitive to sounds and does not hold his ears . he can begin a conversation but usually gets lost or drifts to antoher subject . his memory is excellent he can listen to a song 2 times and know all the words .

[Sally44]

I forgot to ask you if he has any sensory issues.  Does he appear deaf sometimes ie. not respond to his name, or cover his ears at certain noise, or does he like to make alot of noise.  What are his senses of smell, touch, taste, balance and co-ordination like.  Is he okay having his hair brushed, nails cut, socks and shoes on, tags in clothes.  Does he like to spin or does he flap his hands?  Does he like to climb and go on the swing or does he scream if his feet leave the floor, or does he climb too high and seems unaware of danger.  Do you trust him out on the streets walking with you, or are you afraid that he will run off, hide, or do something dangerous.